Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Oh gee, Trish - take a deep breath and eat that chocolate! You have so much on your plate! When I read all this I wonder - does Bobby have a teacher of the deaf? That's really (IMHO) should be teaching the teachers about checking stuff, pre-teaching, etc. Ours does an inservice for teachers. I know others on the list have time weekly (even daily) for their child with their ToD. You can include ToD services in Bobby's IEP or his 504 plan. Take care! Barbara Trish Whitehouse wrote: > I am so sorry to be asking so many questions. Here I was yesterday patting myself on the back for knowing so much and today I am humbled into a child's ignorance. > > I'm not feeling so great right about now. I just came back from an AV session and learned that the things I am telling and showing the school are possibly wrong. So I am confusing them, but I don't know enough myself to know that what I am teaching them is not right. They don't know anything, so whatever I say seems good to them. The AV therapist is swamped and she is trying to give us as much time as she can, but we are not her only clients. > > I have been going into the classroom (kindergarten, new school for Bobby) and making sure they are putting on the boots for the FM correctly and checking it out the right way. Ever since the AV therapist did an in-service on Wed of last week, and found out that both Bobby's hearing aids were turned off the whole time he was in school, I haven't trusted a thing they are doing. Understandably so. So I have been in there each morning to make sure they are checking everything right and I am there to answer questions. Today I went in with this thing Felicity on this list had given me which is a cord that attaches right to the shoes (I think) of the FM thingy of the hearing aid, and it plugs right into a CD player, or in this case a computer. So I am so proud of myself, teaching the computer person how to use this thing, looking like I know what I am doing, and we all realized that if we take off the boot of the FM and only have the shoe (see how little I know? I don't even ! > know if I am calling the right parts by the right name), you just cut off the voice of the guy wearing the FM mic. So when I went to Soundbridge, I asked the AV therapist what we should do and she said we shouldn't use this thing at all, we would be better off with a patch cord which would feed right into his FM. A what? I never even heard of it. I don't know what I am doing. I am not experienced enough to teach anybody anything, but someone has to. Now I am confusing them. I hate this, I really do. I am so overwhelmed, trying to teach everyone, check on Bobby to make sure he doesn't get hit by a bus because his hearing aids are off, trying to do AV therapy and catch up 5 years worth of hearing loss in one " golden " year while I can work with him after Kindergarten gets out for the day. I hate that they are reading CHAPTER books to the kids in K, and I am trying to do pre and post teaching, and the AV therapist said, forget it, it's not worth my time, they shouldn't ! > be reading chapter books of a 3 rd and 4th grade reading level to kids > in kindergarten anyway. I am confused. I am overwhelmed. And I feel for all that I have learned in the last 6 months, I am a total idiot. > > Sigh...I'm taking the kids out to eat because I can't handle anymore. (dh) is traveling and this is just too much to take on alone and handle with any humor anymore. > > I'll get a nice chocolate dessert! > > Trish. " Desperate-for-support-Trish " > > Visit Trish and Bobby's Marathon website at > http://www.firstgiving.com/bobbymarathon > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 I can't answer your questions - but I feel your pain. I just learned this afternoon that Elias had his FM system set to the wrong channel all day in school today. I never noticed. His speech therapist was the one who noticed. Elias even tried to tell me when I was driving home today that the FM wasn't working, but silly me - I knew the battery was down and thought that was the problem No! The channel had been changed by mistake (and it is REALLY easy to do that with this unit). So I am kind of a doofus today too. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Bonnie, Glad to know I am not the only one. I needed a degree in cardiology, and now I need one in audiology. Or is it speech pathology? Or maybe a certification in AV therapy? Being a registered nurse certainly doesn't cut it, does it. Could someone explain to me what a patch cord is? Oh, and the reason the HA was accidentally shut off by the school is because when they put the boot on, they accidentally hit the gray button which was supposed to have been disabled. But it obviously is not. The audiologist told me today that his R aid has three programs; one is the regular program, one is to turn it off, and one is for the T coil. What they heck is that now. What is a Tcoil? Something for the telephone? I told her to get rid of everything except for his regular program and we'll shut it off and on by closing the battery door like we were told to do from the beginning. The Left aid has two programs, one off and one his regular program. The chocolate was only a temporary fix. Now I feel fat and miserable! Trish Visit Trish and Bobby's Marathon website at http://www.firstgiving.com/bobbymarathon Bonnie wrote: I can't answer your questions - but I feel your pain. I just learned this afternoon that Elias had his FM system set to the wrong channel all day in school today. I never noticed. His speech therapist was the one who noticed. Elias even tried to tell me when I was driving home today that the FM wasn't working, but silly me - I knew the battery was down and thought that was the problem No! The channel had been changed by mistake (and it is REALLY easy to do that with this unit). So I am kind of a doofus today too. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Trish - a t-coil is a telecoil and it's helpful for more than just the telephone. When my boys wore two hearing aids, the t-coil along with a neckloop worked in lieu of headphones for things like iPods, etc. At this point, Bobby might be a bit young for that but as he gets older, my boys loved it. I don't know about the patch cord. You know, if you can swing it, the e School for the Deaf has a wonderful fall conference. I'm sad to say we've probably outgrown it given our boys' ages but we attended every year for the last 6-7 years. The link to the fall conference is here: http://www.clarkeschool.org/content/mainstream/fall_conference.php I know in the past, they offer scholarships to parents (I think it amounts to half price for the fee). Not only were the workshops excellent, you actually got to meet vendors which parents *never* get to do. I learned so much - it was truly eye-opening. I figure you're fairly close to it - it's in Springfield MA. It's well worth it... Sorry the chocolate was only a quick fix! Can you email me some?! :-) Barbara Trish Whitehouse wrote: > Bonnie, > > Glad to know I am not the only one. I needed a degree in cardiology, and now > I need one in audiology. Or is it speech pathology? Or maybe a > certification in AV therapy? Being a registered nurse certainly doesn't cut > it, does it. > > Could someone explain to me what a patch cord is? Oh, and the reason the HA > was accidentally shut off by the school is because when they put the boot > on, they accidentally hit the gray button which was supposed to have been > disabled. But it obviously is not. The audiologist told me today that his > R aid has three programs; one is the regular program, one is to turn it off, > and one is for the T coil. What they heck is that now. What is a Tcoil? > Something for the telephone? I told her to get rid of everything except for > his regular program and we'll shut it off and on by closing the battery door > like we were told to do from the beginning. The Left aid has two programs, > one off and one his regular program. > > The chocolate was only a temporary fix. Now I feel fat and miserable! > > Trish > Visit Trish and Bobby's Marathon website at > http://www.firstgiving.com/bobbymarathon > > > Bonnie wrote: I can't answer your questions - but I feel your pain. I just > learned this > afternoon that Elias had > his FM system set to the wrong channel all day in school today. I never > noticed. His speech > therapist was the one who noticed. Elias even tried to tell me when I was > driving home today > that the FM wasn't working, but silly me - I knew the battery was down and > thought that > was the problem No! The channel had been changed by mistake (and it is > REALLY easy to do that > with this unit). > > So I am kind of a doofus today too. > > Bonnie > > > > 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 12, 2006 Report Share Posted September 12, 2006 I'm so sorry - I should have said that you can order neckloops from various places. A number of us have ordered from a retired gentleman - of course his website is on my other computer! There are other companies that sell them too. It looks like a loop that then plugs into the iPod (or television, etc.) that works in tandem with hearing aids on the t-coil switch. I didn't mean to confuse more if I did! Barbara Mellert wrote: > Trish - a t-coil is a telecoil and it's helpful for more than just the > telephone. When my boys wore two hearing aids, the t-coil along with a > neckloop worked in lieu of headphones for things like iPods, etc. At > this point, Bobby might be a bit young for that but as he gets older, my > boys loved it. > > I don't know about the patch cord. > > You know, if you can swing it, the e School for the Deaf has a > wonderful fall conference. I'm sad to say we've probably outgrown it > given our boys' ages but we attended every year for the last 6-7 years. > The link to the fall conference is here: > > http://www.clarkeschool.org/content/mainstream/fall_conference.php > > I know in the past, they offer scholarships to parents (I think it > amounts to half price for the fee). Not only were the workshops > excellent, you actually got to meet vendors which parents *never* get to > do. I learned so much - it was truly eye-opening. I figure you're > fairly close to it - it's in Springfield MA. It's well worth it... > > Sorry the chocolate was only a quick fix! Can you email me some?! :-) > > Barbara > > Trish Whitehouse wrote: > >> Bonnie, >> >> Glad to know I am not the only one. I needed a degree in cardiology, and now >> I need one in audiology. Or is it speech pathology? Or maybe a >> certification in AV therapy? Being a registered nurse certainly doesn't cut >> it, does it. >> >> Could someone explain to me what a patch cord is? Oh, and the reason the HA >> was accidentally shut off by the school is because when they put the boot >> on, they accidentally hit the gray button which was supposed to have been >> disabled. But it obviously is not. The audiologist told me today that his >> R aid has three programs; one is the regular program, one is to turn it off, >> and one is for the T coil. What they heck is that now. What is a Tcoil? >> Something for the telephone? I told her to get rid of everything except for >> his regular program and we'll shut it off and on by closing the battery door >> like we were told to do from the beginning. The Left aid has two programs, >> one off and one his regular program. >> >> The chocolate was only a temporary fix. Now I feel fat and miserable! >> >> Trish >> Visit Trish and Bobby's Marathon website at >> http://www.firstgiving.com/bobbymarathon >> >> >> Bonnie wrote: I can't answer your questions - but I feel your pain. I just >> learned this >> afternoon that Elias had >> his FM system set to the wrong channel all day in school today. I never >> noticed. His speech >> therapist was the one who noticed. Elias even tried to tell me when I was >> driving home today >> that the FM wasn't working, but silly me - I knew the battery was down and >> thought that >> was the problem No! The channel had been changed by mistake (and it is >> REALLY easy to do that >> with this unit). >> >> So I am kind of a doofus today too. >> >> Bonnie >> >> >> >> 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 12, 2006 Report Share Posted September 12, 2006 Hi, Trish. Debbie wrote: You're not a total idiot. You want what's best for your son. I saw that you refered to the one golden year. I'm guessing that you are refering to that " window of language " that put absolute fear in my heart. From the day she was diagnosed I kept hearing that her window for accquiring language would close when she was 5-6. It was that fear that made me doubt some of the choices we were making for . Would we ever be able to bring her langauge skills up to the level of her peers in time? I doubted myself as a parent. One week I would think that we should be doing something different, and then the next week, things seemed fine as they were. I was a stressed out mom who only wanted to do the right thing for her child....the same as you. So breathe. You are only one person, but it sounds like you're doing everything that you can to make sure that your child is successful. Yep...there will be plenty of bumps in the road. But for everycouple of bumps, there will be something else that will make you say " YES! we are going to make it " ** Debbie hit the nail right on the proverbial head, Trish. And let me tell you, I *still* panic over the issues we're facing with and his language struggles, and I'm pretty sure that there's a permanent bruise on my rear end from where I've been kicking myself for the last 3 years wondering how much of this we could have addressed more effectively *if only* we had known about his hearing loss. But kicking myself and getting stressed doesn't help me to fight battles for him - getting empowered by getting more information does. If only that process didn't make me feel like I was *drowning* in information, I'd be set. One thing that keeps me going is seeing how has grown and encountered what Montessori referred to as " sensitive growth periods " along the way. There are times when all he wants to do is work on math facts, math-related concepts, and other math works. Then he'll even out for a time, only to veer into a creative phase where it's all about drawing and telling a story through pictures. Then it's onto something else. Once we realize that he's in a period that's language-centric, his teacher will aggressively work to get him to incorporate more writing than usual into his works, or involve him in verbal presentations to small groups, etc - anything to " ramp up " the amount of language reinforcement that he's already receiving via speech therapy and such. At home, we'll notice these periods because he suddenly explodes with an expanded vocabulary and means of expression that we've never heard come from him. And when we hear those explosions, they're that much sweeter because we know how hard he's worked to make them happen. It's our " YES! " moment that Deb referred to in her message. While it is true that the largest window of language is present when children are young, the window never truly closes - it just lowers the shade from time to time. I know that Bobby is just starting out in school - and he's gone through more in his life than I'll probably ever go through in my entire lifetime. But he sure sounds like one resilient little guy, and I bet that you are all going to be more than " OK " . Just keep plugging away, and know that you're going to probably make some mistakes here and there (heaven knows I've made my fair share) - but the day is going to come, probably when you least expect it, when everything you're working so hard to help Bobby achieve will become a beautiful reality. I'm done yammering now. ;-) Hugs to you, Kris Mom to (8, Profound/Complete SNL, Left Ear) and Ethan (7, hearing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Trish, I am so sorry. I should have told you that the cord into the computer couldn't be used at the same time as the FM. There is a different cord that we used to use that plugs into the FM and then into the computer. They should have given you one of these with the FM. We only use the plug in cord when he is doing only one thing he is concentrating on - like watching the DVD, or (although we haven't done this yet) being on the computer at home, or being on the stereo. I am feeling so bad that I didn't explain it properly. The thing I gave you is just a direct input shoe not something that works with the FM at all, as you have to take the receiver off to use it. Sorry!!! If it is any consolation, I always make mistakes with new technology. After all, we weren't born knowing this stuff, and are bound to get it wrong sometimes. I once mended 's HA battery door with scotch tape. No problem there, except that if you put the tape on the bottom of the aids, the boot doesn't connect to the points on the bottom of the aid. Hell, I didn't even know that it was supposed to. I just thought it connected to the points on the side of the aid. That knocked out 2 days of 's hearing until a guy who was setting up a new FM for us noticed the problem! Could have been months that he wasn't hearing at school and I would never have known... Felicity (Mom to , 4, profound SNHL, and Ben, 2, hearing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Felicity, It's not you! It's not even me! The problem is that a teacher of the Deaf and Hard of Hearing, which I suppose is Ellen, is supposed to be teaching them this stuff and not me. But can she come to the school every morning to make sure he doesn't get hit by a bus? No, soundbridge is a good hour away. I think this AV therapist IS the Teacher of the Deaf, because she has her degree in speech.language, and a degree in teaching the deaf and then further certification on AV therapy. so I am assuming she is the one who is supposed to be doing this stuff. She's wonderful, she really is, but I sensed even her losing her patience with Bobby's fidgeting and restlessness yesterday, she went so far as to move him into a test booth to minimize distractions, but he still found them in there. And I am so needy, which is quite evident by even my posts on this board, that I am afraid that she is getting sick of me. I need so much education, I am probably a full time job by myself, and she's got something like 12 other kids she is responsible for. So I see her predicament too. But in the meantime, I am sitting here knowing that we are a family that needs intensive intervention, here 5 years later than it should have been given to us, and I feel totally powerless and trapped. It's not a good place to be at all. I know just enough to know how little I know. So please don't blame yourself, I was so touched that you would even give us this " thing " in the first place, goes to show me what is really out there and all that is available for these kids, I just don't know how to do most of this stuff. Guess I'll learn real quick, though, huh... Thanks for all of your help, Felicity. Maybe this is just the wake up call the school and Soundbridge needs to know that I CAN " T be the one in charge here. Trish Visit Trish and Bobby's Marathon website at http://www.firstgiving.com/bobbymarathon Re: I need help again! > Trish, I am so sorry. I should have told you that the cord into the > computer couldn't be used at the same time as the FM. > There is a different cord that we used to use that plugs into the FM and > then into the computer. They should have given > you one of these with the FM. We only use the plug in cord when he is > doing only one thing he is concentrating on - like > watching the DVD, or (although we haven't done this yet) being on the > computer at home, or being on the stereo. I am > feeling so bad that I didn't explain it properly. The thing I gave you is > just a direct input shoe not something that works with > the FM at all, as you have to take the receiver off to use it. > > Sorry!!! > > If it is any consolation, I always make mistakes with new technology. > After all, we weren't born knowing this stuff, and are > bound to get it wrong sometimes. I once mended 's HA battery door with > scotch tape. No problem there, except that if > you put the tape on the bottom of the aids, the boot doesn't connect to > the points on the bottom of the aid. Hell, I didn't > even know that it was supposed to. I just thought it connected to the > points on the side of the aid. That knocked out 2 days > of 's hearing until a guy who was setting up a new FM for us noticed > the problem! Could have been months that he > wasn't hearing at school and I would never have known... > > Felicity > > (Mom to , 4, profound SNHL, and Ben, 2, hearing) > > > > 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 13, 2006 Report Share Posted September 13, 2006 Trish, I'm not sure that your AVT is the one who should be training the school people. But you need to get, find etc a TOD or audiologist or someone trained in this stuff to work with the folks at your school. Does your school system have an audiologist or contract with one? Soundbridge may be able to do this, and it may be that they need to get asked by the school system. You CAN'T be the one at the school who knows the most about hearing loss equipment. (You'll go crazy and so will they!) Someone at the school needs to take that over and they need to be trained. I'd start with your principal and see if they will get the ball rolling. I'd also try to work on expectations. We sent Maggie to preschool with low expectations about what she would learn at the school, because we knew the really important stuff would happen in AV Therapy. What she got out of school would be icing on the cake. We did that for two years before we changed our expectation model (always kept them high but didn't expect the school to be the primary source for the first two years) to expecting the school to educate her. So don't feel like you just have one year, you can take longer. Remember Bobby has only been hearing well for a few months. Get out of frenzy mode - what ever it takes, YOU need it! I recall that feeling so well and it really is self defeating. Be good to yourself. Re: Re: I need help again! > >Felicity, > >It's not you! It's not even me! The problem is that a teacher of the Deaf >and Hard of Hearing, which I suppose is Ellen, is supposed to be teaching >them this stuff and not me. But can she come to the school every morning to >make sure he doesn't get hit by a bus? No, soundbridge is a good hour away. >I think this AV therapist IS the Teacher of the Deaf, because she has her >degree in speech.language, and a degree in teaching the deaf and then >further certification on AV therapy. so I am assuming she is the one who is >supposed to be doing this stuff. > >She's wonderful, she really is, but I sensed even her losing her patience >with Bobby's fidgeting and restlessness yesterday, she went so far as to >move him into a test booth to minimize distractions, but he still found them >in there. And I am so needy, which is quite evident by even my posts on >this board, that I am afraid that she is getting sick of me. I need so much >education, I am probably a full time job by myself, and she's got something >like 12 other kids she is responsible for. So I see her predicament too. >But in the meantime, I am sitting here knowing that we are a family that >needs intensive intervention, here 5 years later than it should have been >given to us, and I feel totally powerless and trapped. It's not a good >place to be at all. I know just enough to know how little I know. > >So please don't blame yourself, I was so touched that you would even give us >this " thing " in the first place, goes to show me what is really out there >and all that is available for these kids, I just don't know how to do most >of this stuff. Guess I'll learn real quick, though, huh... > >Thanks for all of your help, Felicity. Maybe this is just the wake up call >the school and Soundbridge needs to know that I CAN " T be the one in charge >here. > >Trish >Visit Trish and Bobby's Marathon website at >http://www.firstgiving.com/bobbymarathon > > Re: I need help again! > > >> Trish, I am so sorry. I should have told you that the cord into the >> computer couldn't be used at the same time as the FM. >> There is a different cord that we used to use that plugs into the FM and >> then into the computer. They should have given >> you one of these with the FM. We only use the plug in cord when he is >> doing only one thing he is concentrating on - like >> watching the DVD, or (although we haven't done this yet) being on the >> computer at home, or being on the stereo. I am >> feeling so bad that I didn't explain it properly. The thing I gave you is >> just a direct input shoe not something that works with >> the FM at all, as you have to take the receiver off to use it. >> >> Sorry!!! >> >> If it is any consolation, I always make mistakes with new technology. >> After all, we weren't born knowing this stuff, and are >> bound to get it wrong sometimes. I once mended 's HA battery door with >> scotch tape. No problem there, except that if >> you put the tape on the bottom of the aids, the boot doesn't connect to >> the points on the bottom of the aid. Hell, I didn't >> even know that it was supposed to. I just thought it connected to the >> points on the side of the aid. That knocked out 2 days >> of 's hearing until a guy who was setting up a new FM for us noticed >> the problem! Could have been months that he >> wasn't hearing at school and I would never have known... >> >> Felicity >> >> (Mom to , 4, profound SNHL, and Ben, 2, hearing) >> >> >> >> 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 13, 2006 Report Share Posted September 13, 2006 In a message dated 9/13/2006 8:37:06 A.M. Eastern Standard Time, chester2001@... writes: The audiologist who is covering for her is overwhelmed too. So guess what...we're not a high priority. We just have to get in line. So it's been up to me, , or he'd just be lost in that school. Heck, " Lost " I don't even care about, how about " killed " because his deaf ears are plugged up by useless hearing aids. Trish, Let's take that letter and rework it to reflect just this issue. You can't simply wait in line while untrained teachers potentially break thousands of dollars in equipment. And YOU can't be the one doing thin training for two reasons. One, you're the mom, not the tech and it is not your responsibility. And two, you don't have the training. You're well intentioned but that isn't enough. You need to have a professional do this. And if the ones they have on staff (or on contract) are not available. then they have to bring in someone else. My approach with my district was to find and contact a " consultant " and then tell the school I was going to arrange for the professional training and have that consultant bill the school since they should be doing this. Each time, the school miraculously was able to get the right people in to do what they needed. So, let's try that. Let's emend that letter and make it work for the current situation. Hugs to you -- Jill (who's been semi MIA from the list lately with work) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 In a message dated 9/13/2006 9:33:56 A.M. Eastern Standard Time, bkmackellar@... writes: She has the main responsiblity for training the teachers and dealing with the equipment in that district. So perhaps TODs aren't always so common? I don't think they have an audiologist either. Our district doesn't have one - they just contract out. Bonnie, Interesting! The wealthiest town around here use to have a D/HOH program in it's school. It ended the year Ian heeded it (ugh) because they didn't have enough student to keep it. So they went through BOCES for services for the students they had. Several of our local TODs use to teach in that program. I wonder if the parents in Bronxville simply hire their own services. If you can afford it, you can hire what you need. I've asked my TOD about her colleagues in Westchester, and the ones she spoke of work in the Northern portion of the county. I don't know much about the southern area -- we also lived/worked in the northern area before buying our house. I'll have to ask her about this when I ask about that sound simulator program. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 The educational audiologist who I guess is supposed to do this is on maternity leave and will be back at the end of the month. She will also be swamped. The audiologist who is covering for her is overwhelmed too. So guess what...we're not a high priority. We just have to get in line. So it's been up to me, , or he'd just be lost in that school. Heck, " Lost " I don't even care about, how about " killed " because his deaf ears are plugged up by useless hearing aids. I know it's self defeating. I am at the point where it is turning from panic into hopelessness and I am feeling terribly sad. I just look at him and think, " God, why on earth do we have to deal with this too. Haven't we already been through enough? " I wish I could be happy and funny today, but I got a very restless few hours of sleep again, I have no idea what to do, I don't know if I should just homeschool him, I just don't know... I am keeping the smiles up for him, though. Thanks for taking the time to write back, Trish Visit Trish and Bobby's Marathon website at http://www.firstgiving.com/bobbymarathon Re: I need help again! > > >> Trish, I am so sorry. I should have told you that the cord into the >> computer couldn't be used at the same time as the FM. >> There is a different cord that we used to use that plugs into the FM and >> then into the computer. They should have given >> you one of these with the FM. We only use the plug in cord when he is >> doing only one thing he is concentrating on - like >> watching the DVD, or (although we haven't done this yet) being on the >> computer at home, or being on the stereo. I am >> feeling so bad that I didn't explain it properly. The thing I gave you is >> just a direct input shoe not something that works with >> the FM at all, as you have to take the receiver off to use it. >> >> Sorry!!! >> >> If it is any consolation, I always make mistakes with new technology. >> After all, we weren't born knowing this stuff, and are >> bound to get it wrong sometimes. I once mended 's HA battery door with >> scotch tape. No problem there, except that if >> you put the tape on the bottom of the aids, the boot doesn't connect to >> the points on the bottom of the aid. Hell, I didn't >> even know that it was supposed to. I just thought it connected to the >> points on the side of the aid. That knocked out 2 days >> of 's hearing until a guy who was setting up a new FM for us noticed >> the problem! Could have been months that he >> wasn't hearing at school and I would never have known... >> >> Felicity >> >> (Mom to , 4, profound SNHL, and Ben, 2, hearing) >> >> >> >> 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 13, 2006 Report Share Posted September 13, 2006 In a message dated 9/13/2006 11:19:02 A.M. Eastern Standard Time, chester2001@... writes: As it was last left, they are trying to schedule a IEP meeting in October and TWO people from Soundbridge ( the school for the Deaf that is contracted with Region 15 for hearing impaired services) are going to be there. So for once, the table will be weighted in our favor with people who really understand and know this world of hearing loss. Trish, See if you can arrange to meet with the Soundbridge people ahead of time to talk about your troubles and concerns. Make sure that the table is weighted towards your side and they are prepared to address the issues you have encountered. Again, if it helps, I'll help in writing a letter to them to state your concerns. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 I was talking to Elias's speech therapist yesterday (after we discovered that the channel on the FM system was set wrong). She works in the Bronxville school district, which is very, very, very wealthy - probably the wealthiest district in an already very wealthy county. She says that they have several hearing impaired kids, and there has never been a TOD involved. She has the main responsiblity for training the teachers and dealing with the equipment in that district. So perhaps TODs aren't always so common? I don't think they have an audiologist either. Our district doesn't have one - they just contract out. Trish - I know you are in a small district too. Does your district have an audiologist? Bonnie > > > Trish, I'm not sure that your AVT is the one who should be training the > school people. But you need to get, find etc a TOD or audiologist or someone > trained in this stuff to work with the folks at your school. Does your > school system have an audiologist or contract with one? Soundbridge may be > able to do this, and it may be that they need to get asked by the school > system. You CAN'T be the one at the school who knows the most about hearing > loss equipment. (You'll go crazy and so will they!) Someone at the school > needs to take that over and they need to be trained. I'd start with your > principal and see if they will get the ball rolling. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Does CREC have someone they could send?? You are right that this is a safety issue. And kind of a no brainer. Do you think your principal would help??? Re: Re: I need help again! > >The educational audiologist who I guess is supposed to do this is on maternity leave and will be back at the end of the month. She will also be swamped. The audiologist who is covering for her is overwhelmed too. So guess what...we're not a high priority. We just have to get in line. So it's been up to me, , or he'd just be lost in that school. Heck, " Lost " I don't even care about, how about " killed " because his deaf ears are plugged up by useless hearing aids. > >I know it's self defeating. I am at the point where it is turning from panic into hopelessness and I am feeling terribly sad. I just look at him and think, " God, why on earth do we have to deal with this too. Haven't we already been through enough? " I wish I could be happy and funny today, but I got a very restless few hours of sleep again, I have no idea what to do, I don't know if I should just homeschool him, I just don't know... I am keeping the smiles up for him, though. > >Thanks for taking the time to write back, > >Trish > > >Visit Trish and Bobby's Marathon website at >http://www.firstgiving.com/bobbymarathon > > Re: I need help again! > > > > > >> Trish, I am so sorry. I should have told you that the cord into the > >> computer couldn't be used at the same time as the FM. > >> There is a different cord that we used to use that plugs into the FM and > >> then into the computer. They should have given > >> you one of these with the FM. We only use the plug in cord when he is > >> doing only one thing he is concentrating on - like > >> watching the DVD, or (although we haven't done this yet) being on the > >> computer at home, or being on the stereo. I am > >> feeling so bad that I didn't explain it properly. The thing I gave you is > >> just a direct input shoe not something that works with > >> the FM at all, as you have to take the receiver off to use it. > >> > >> Sorry!!! > >> > >> If it is any consolation, I always make mistakes with new technology. > >> After all, we weren't born knowing this stuff, and are > >> bound to get it wrong sometimes. I once mended 's HA battery door with > >> scotch tape. No problem there, except that if > >> you put the tape on the bottom of the aids, the boot doesn't connect to > >> the points on the bottom of the aid. Hell, I didn't > >> even know that it was supposed to. I just thought it connected to the > >> points on the side of the aid. That knocked out 2 days > >> of 's hearing until a guy who was setting up a new FM for us noticed > >> the problem! Could have been months that he > >> wasn't hearing at school and I would never have known... > >> > >> Felicity > >> > >> (Mom to , 4, profound SNHL, and Ben, 2, hearing) > >> > >> > >> > >> 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 13, 2006 Report Share Posted September 13, 2006 Are you just trying to get someone in the role of daily checking equipment and making sure the hearing aids are properly on, working, and such? I would immediately call a new IEP and get it wrote into there and if you can not have an audiologist available daily I would get a lay person.. The school nurse or even an aid that will be taught by you or someone else to do this and I would make a checklist and put it into his backpack to have it signed daily and initialed that it was done.. Good Luck.. Without great moms (their Advocates) where would our children be...don't even want to think about it...any other way... Trish..you need to get a big cup of hot chocolate and know your not alone.. I know it feels like it but here we are.... ~Cathy~ -- Re: Re: I need help again! > >The educational audiologist who I guess is supposed to do this is on maternity leave and will be back at the end of the month. She will also be swamped. The audiologist who is covering for her is overwhelmed too. So guess what...we're not a high priority. We just have to get in line. So it's been up to me, , or he'd just be lost in that school. Heck, " Lost " I don't even care about, how about " killed " because his deaf ears are plugged up by useless hearing aids. > >I know it's self defeating. I am at the point where it is turning from panic into hopelessness and I am feeling terribly sad. I just look at him and think, " God, why on earth do we have to deal with this too. Haven't we already been through enough? " I wish I could be happy and funny today, but I got a very restless few hours of sleep again, I have no idea what to do, I don't know if I should just homeschool him, I just don't know... I am keeping the smiles up for him, though. > >Thanks for taking the time to write back, > >Trish > > >Visit Trish and Bobby's Marathon website at >http://www.firstgiving.com/bobbymarathon > > Re: I need help again! > > > > > >> Trish, I am so sorry. I should have told you that the cord into the > >> computer couldn't be used at the same time as the FM. > >> There is a different cord that we used to use that plugs into the FM and > >> then into the computer. They should have given > >> you one of these with the FM. We only use the plug in cord when he is > >> doing only one thing he is concentrating on - like > >> watching the DVD, or (although we haven't done this yet) being on the > >> computer at home, or being on the stereo. I am > >> feeling so bad that I didn't explain it properly. The thing I gave you is > >> just a direct input shoe not something that works with > >> the FM at all, as you have to take the receiver off to use it. > >> > >> Sorry!!! > >> > >> If it is any consolation, I always make mistakes with new technology. > >> After all, we weren't born knowing this stuff, and are > >> bound to get it wrong sometimes. I once mended 's HA battery door with > >> scotch tape. No problem there, except that if > >> you put the tape on the bottom of the aids, the boot doesn't connect to > >> the points on the bottom of the aid. Hell, I didn't > >> even know that it was supposed to. I just thought it connected to the > >> points on the side of the aid. That knocked out 2 days > >> of 's hearing until a guy who was setting up a new FM for us noticed > >> the problem! Could have been months that he > >> wasn't hearing at school and I would never have known... > >> > >> Felicity > >> > >> (Mom to , 4, profound SNHL, and Ben, 2, hearing) > >> > >> > >> > >> 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 13, 2006 Report Share Posted September 13, 2006 Regrettably, the Infant and Toddlers program is designed to teach parents the very things you need to know. This ends at age three. The school system is geared to only work with the child, not the parent. This is a universal problem and is why you can't get the personal support you need. You probably won't be able to get the answers you need through them. Get to a local university that teaches audiology and talk to them regarding your chld's hearing loss. Often, if you take your child for an assessment, they will take the time to talk to you about all of the questions that you have. Or, if you have a private audiologist, they should explain all of this to you. If your only audiologist is with the school system, and they are not providing support, then you'll need to get your own. I prefer the local universities as they are used to teaching and therefore they are usually good at explaining. Or, you can call one of us and ask us your questions. I'll be happy to give you my ph one number if you need some info. I have almost 16 years of this behind me. --------- Re: I need help again! > > > > Trish, I am so sorry. I should have told you that the cord into the > > computer couldn't be used at the same time as the FM. > > There is a different cord that we used to use that plugs into the FM and > > then into the computer. They should have given > > you one of these with the FM. We only use the plug in cord when he is > > doing only one thing he is concentrating on - like > > watching the DVD, or (although we haven't done this yet) being on the > > computer at home, or being on the stereo. I am > > feeling so bad that I didn't explain it properly. The thing I gave you is > > just a direct input shoe not something that works with > > the FM at all, as you have to take the receiver off to use it. > > > > Sorry!!! > > > > If it is any consolation, I always make mistakes with new technology. > > After all, we weren't born knowing this stuff, and are > > bound to get it wrong sometimes. I once mended 's HA battery door with > > scotch tape. No problem there, except that if > > you put the tape on the bottom of the aids, the boot doesn't connect to > > the points on the bottom of the aid. Hell, I didn't > > even know that it was supposed to. I just thought it connected to the > > points on the side of the aid. That knocked out 2 days > > of 's hearing until a guy who was setting up a new FM for us noticed > > the problem! Could have been months that he > > wasn't hearing at school and I would never have known... > > > > Felicity > > > > (Mom to , 4, profound SNHL, and Ben, 2, hearing) > > > > > > > > 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 13, 2006 Report Share Posted September 13, 2006 Yes, , he was in Birth to Three (that's what it's called here) for 3 entire years. Not one of the therapists thought to mention anything about a hearing test to us, though he had enough risk factors to red flag him big time. They didn't do one at birth because he was so critical. when he finally got old enough to speak, they excused his delays with the fact that he was tube fed since birth and didn't use his oral motor skills like a normal child. I could go on, bottom line is that it was missed. For a very long time. The educational audiologist is on maternity leave. The audiologists taking her place are swamped with her additional case load. We have a private audiologist through Yale, which is where he was first diagnosed, I guess I need to ask her but when we went to buy the FM from her, she didn't know much about it because she mainly deals with the adult population. Great. I can't get into the pediatric audiologist for some reason...long wait time or something like that. I've tried before. Going to the university sounds lie a very good idea. I will look into that, thanks very much. Thanks for taking the time to reply, Trish Visit Trish and Bobby's Marathon website at http://www.firstgiving.com/bobbymarathon Re: I need help again! > > > > Trish, I am so sorry. I should have told you that the cord into the > > computer couldn't be used at the same time as the FM. > > There is a different cord that we used to use that plugs into the FM and > > then into the computer. They should have given > > you one of these with the FM. We only use the plug in cord when he is > > doing only one thing he is concentrating on - like > > watching the DVD, or (although we haven't done this yet) being on the > > computer at home, or being on the stereo. I am > > feeling so bad that I didn't explain it properly. The thing I gave you is > > just a direct input shoe not something that works with > > the FM at all, as you have to take the receiver off to use it. > > > > Sorry!!! > > > > If it is any consolation, I always make mistakes with new technology. > > After all, we weren't born knowing this stuff, and are > > bound to get it wrong sometimes. I once mended 's HA battery door with > > scotch tape. No problem there, except that if > > you put the tape on the bottom of the aids, the boot doesn't connect to > > the points on the bottom of the aid. Hell, I didn't > > even know that it was supposed to. I just thought it connected to the > > points on the side of the aid. That knocked out 2 days > > of 's hearing until a guy who was setting up a new FM for us noticed > > the problem! Could have been months that he > > wasn't hearing at school and I would never have known... > > > > Felicity > > > > (Mom to , 4, profound SNHL, and Ben, 2, hearing) > > > > > > > > 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 13, 2006 Report Share Posted September 13, 2006 Barbara, I sent my dh (he is away which is not making any of this any easier) the link for e's conference, and he said, " Sigh us both up! " So we're going. Even if I can network with some more parents, find out that I am not alone, it will be worth it. thanks for the info, I had heard about their fall conferences, but forgot to look into it. It's local and I can work it around the kids' schedules. Everything helps. thank you, thank you, thank you! Trish Visit Trish and Bobby's Marathon website at http://www.firstgiving.com/bobbymarathon You know, if you can swing it, the e School for the Deaf has a wonderful fall conference. I'm sad to say we've probably outgrown it given our boys' ages but we attended every year for the last 6-7 years. The link to the fall conference is here: http://www.clarkeschool.org/content/mainstream/fall_conference.php I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Debbie, Thanks for replying, this was all very helpful information. So your daughter DID get something from those Junie B books. The AV therapist said to just forget about them and to focus on more important things. But then that's 15 or so minutes that he will just be staring off into space, wondering what the heck is going on if I don't read them and talk to him about them first. You're right. I need to breathe. And sleep some. (I am going up to take a nap right after I write this). And let some of it go. Just not when it comes down to his safety. I think the SLT has how to check the FM down pat now, and I am not going to worry about the computers until the AV therspist gets in there to inservice the staff. Maybe it wouldn't be so hard on her if the Ed Audiologist wasn't on maternity leave, but she is, so I think itis all getting dumped on the AV therapist. The audiologist should be back the end of this month, so no matter how part time she is, or how her schedule is tight, at least she is one more person more or less there to teach the people in this school what to do. As it was last left, they are trying to schedule a IEP meeting in October and TWO people from Soundbridge ( the school for the Deaf that is contracted with Region 15 for hearing impaired services) are going to be there. So for once, the table will be weighted in our favor with people who really understand and know this world of hearing loss. Thanks for writing and helping, and most of all understanding. Trish Visit Trish and Bobby's Marathon website at http://www.firstgiving.com/bobbymarathon Hi Trish, There will be good days...and there will be bad days. Eventually there will be more good than bad, it's just getting to that point that's difficult. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Kris wrote: " I know that Bobby is just starting out in school - and he's gone through more in his life than I'll probably ever go through in my entire lifetime. But he sure sounds like one resilient little guy, and I bet that you are all going to be more than " OK " . Just keep plugging away, and know that you're going to probably make some mistakes here and there (heaven knows I've made my fair share) - but the day is going to come, probably when you least expect it, when everything you're working so hard to help Bobby achieve will become a beautiful reality. " (wiping away the tears) OK, I am doing OK, and it will all come together. I so hope something wonderful does happen from this because all I see right now is the way he struggles so much. And I hurt for him. I guess this is the grief they talk about that comes with finally realizing your kid has a hearing loss, and that it will affect them for their whole life. Funny, I was actually excited, kind of in a warped way, when that told me last year that he had a hearing loss because it was as if I was FINALLY validated for all the times I told someone something was wrong, and I also felt like now maybe things would be better. Excited! Can you imagine that! It wasn't until months and month later, when I started going to conferences, that I sat back and said, " Oh, sh#t, this isn't playtime anymore, this is a major problem that he has not heard for so long. " It's a feeling of helplessness and it's one more thing I wish I could trade places with him so I could give him my good (but aging) ears and I'd take his rotten hearing. But it doesn't work that way, does it. Thanks for the hugs, I need them today. I am finding myself tearing up at almost anything and very weepy. Yup, this must be the grief they are talking about... hurts to feel it. Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Trish, how about printing up the info and getting it to your school - you never know, they need continuing ed credits and then they would be getting the info direct from the horses mouth instead of from you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Yes, that was my first thought. Especially this SLT who seems to have enough background knowledge to underatand. Or maybe the spec ed teacher who DOESN " T have any background knowledge at all! Trish Visit Trish and Bobby's Marathon website at http://www.firstgiving.com/bobbymarathon ----- Original Message ----- Trish, how about printing up the info and getting it to your school - you never know, they need continuing ed credits and then they would be getting the info direct from the horses mouth instead of from you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 I think Rye Brook has a HOH program in its schools. They are also wealthy, although not in Bronxville's league, and are in central Westchester. The big innovation in my town (Eastchester) is that we now have an " integrated room " in our K-1 school, for special ed kids. I thought this was the norm everywhere, but evidently it is really new here in Eastchester. Before, they used to send special kids out of district for school. On the other end of the spectrum, Eastchester is also incredibly regressive when it comes to gifted kids. Last year, when my older kid was in K, I went to talk to the teacher because my son was already reading chapter books and doing addition/substraction with ease. I was told that they don't accelerate (district policy) and they won't supplement with material from the next grade up. So I have learned that Eastchester is truly a " one size fits all " school district. Bonnie > > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Trish - I'm so glad! I think you'll enjoy it so much. Not only the learning but the contacts you'll make with other parents and the wonderful folks at e. Dave Manning and his wife, Barb both work at the Mainstream Center - I swear I couldn't have made it through the early years without them. So try and look them up. And be sure and visit the exhibits with the vendors - that's amazingly helpful. Barbara Trish Whitehouse wrote: > Barbara, > > I sent my dh (he is away which is not making any of this any easier) the > link for e's conference, and he said, " Sigh us both up! " So we're > going. Even if I can network with some more parents, find out that I am not > alone, it will be worth it. thanks for the info, I had heard about their > fall conferences, but forgot to look into it. It's local and I can work it > around the kids' schedules. Everything helps. thank you, thank you, thank > you! > > Trish > Visit Trish and Bobby's Marathon website at > http://www.firstgiving.com/bobbymarathon > > > > > You know, if you can swing it, the e School for the Deaf has a > wonderful fall conference. I'm sad to say we've probably outgrown it > given our boys' ages but we attended every year for the last 6-7 years. > The link to the fall conference is here: > > http://www.clarkeschool.org/content/mainstream/fall_conference.php > > I > > > 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...
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