Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Basically if it fits in the IEP, all things are possible. Some districts are more accomodating with FMs than others. I have heard of one family who basically said if you don't let us use the FM unit for home life, then we will not let you use the aides for school life and you will need to buy your own. Kim > Does anybody have the school FM available to be used at extracurricular > activities that are not school-sponsored? Last year, we were spoiled > because we had our own FM system that we let the school use during the > day. We lost her aids and now the new ones are not compatible with the > old FM system. So... we could spend $800 of our own money to get the > additional equipment.... but it seems that the school could loan their > FM for soccer practice, church youth group, dance lessons, and scouts. > These are the noisy environments when she needs that extra link to the > instructor. Has anyone had success in getting this for their child?? > > What about an aide at any of these non-school functions??? What about > an aide at school events -- like the cheerleading camp our cheerleaders > are putting on or the extra art camp the high school teacher does for > the elementary kids?? Does your IEP include community things like > scouts, church groups, sports, dance??? > > Thanks in advance for any input. > > Michele W > Aubrie's mom 7 yrs entering 2nd grade -- IEP on Monday afternoon > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Oh yes and of course the reason they would not leave the aids at schol would be due to concern that they would be broken or lost.... You get the picture. Kim > Basically if it fits in the IEP, all things are possible. > Some districts are more accomodating with FMs than others. I have heard of > one family who basically said if you don't let us use the FM unit for home > life, then we will not let you use the aides for school life and you will > need to buy your own. > > Kim > > > > >> Does anybody have the school FM available to be used at extracurricular >> activities that are not school-sponsored? Last year, we were spoiled >> because we had our own FM system that we let the school use during the >> day. We lost her aids and now the new ones are not compatible with the >> old FM system. So... we could spend $800 of our own money to get the >> additional equipment.... but it seems that the school could loan their >> FM for soccer practice, church youth group, dance lessons, and scouts. >> These are the noisy environments when she needs that extra link to the >> instructor. Has anyone had success in getting this for their child?? >> >> What about an aide at any of these non-school functions??? What about >> an aide at school events -- like the cheerleading camp our cheerleaders >> are putting on or the extra art camp the high school teacher does for >> the elementary kids?? Does your IEP include community things like >> scouts, church groups, sports, dance??? >> >> Thanks in advance for any input. >> >> Michele W >> Aubrie's mom 7 yrs entering 2nd grade -- IEP on Monday afternoon >> >> >> >> >> Membership of this email support groups does not constitute membership in the >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter), >> please contact marion@... or visit >> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada >> information and membership, please visit http://www.chargesyndrome.ca, or >> email info@.... >> 8th International >> CHARGE Syndrome Conference, July, 2007. Information will be available at >> www.chargesyndrome.org or by calling 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 That sounds so reasonable to me. Especially after I let them use my FM for a year. We'll see how things go. I am not looking forward to this. Remember when we had our big meeting earlier about summer and 2nd grade? I agonized over so many issues. We got very few concessions for summer and left the 2nd grade issues for now. Two days before school starts we're gonna talk about what needs to happen. I know it's gonna stink. I'll probably leave thinking it's not so bad cuz I'll get some things, but later it'll sink in that it's just not enough. I've been asking for the same things since age 3. Yes, she's doing " well " -- but she needs to do better. It's that old thing of who's standards are you measuring " well " by -- doing well for a kid who we didn't think would even talk or doing well for any kid her age?? I had contacted a legal advocacy group. All of our issues didn't fit with their agenda/target issues, but they did give my case to an advocate who was suppose to work with me on the technology piece. I didn't hear from her before vacation, left a message for her the other day, and haven't heard anything yet. You know that's not gonna be much help if I am able to reach her tomorrow. Argh. I've just started reviewing my IEP stuff so you caught me in a whirlwind. Sorry -- but thanks for the reply and for listening to more. Michele W Kim Lauger wrote: > Basically if it fits in the IEP, all things are possible. > Some districts are more accomodating with FMs than others. I have > heard of > one family who basically said if you don't let us use the FM unit for home > life, then we will not let you use the aides for school life and you will > need to buy your own. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Michele, I was very disappointed this year when I found out that our dream class for the young boys who are deafblind was not going to come together again. It seemed that Dylan was just getting tacked onto another class, but he didn't really learn that way. We have so much here that I know we would fight tooth and nail for someplace else, and we have so many specialists who really get deafblindness and to a certain degree CHARGE (although I doubt anyone pays attention to the CHARGE issues as me), and his intervener is awesome. BUT finding a teacher who " gets it " has been the challenge, no matter how good the IEP is. Well it turns out that this teacher is phenomenal!!!!!!!!!!!! Dylan is being included in the class flow like any other kid. He is learning to imitate the others during games, learned a new calendar system that used different colors of ribbon to represent the different days of the week, matched with a box with that color ribbon for the cues for that day, and a lanyard of that ribbon to hang the cues on. For the first time he is having conversations about yesterday, today, tomorrow; days of the week; weekend, vacation....... He is doing science experiments. He is working on getting the concept of names with the kids in class during circle time..... Of course it has a lot to do with the state he is in right now; engaged with the world and like a sponge; with Doe having years of experience with Dylan and then coming to the CHARGE conference where she learned so much, then came back with tons of ideas on how she could adapt different things for Dylan, but the big difference to me is the teacher. Without her - as much as Dylan was ready to take off and Doe had great ideas to implement - there would have just been frustration at knowing he could learn and do more. The teacher's set up of the classroom, expectations for Dylan, calmness with kids making messes while they learn, making the environmental accommodations Dylan needs and so on is the difference between doing okay and awesome! The IEP did not change, the teacher changed! The IEP was being met before, but Dylan is learning now. I guess my point is pay attention to the IEP, decide what your main one or two main things are that you must have this year at the very least and don't leave until you at least get those. Then when school starts I would make sure you are okay with the teacher. If that match is not there, if that teacher does not believe that Aubrie can learn like the others, or is not able to manage the accommodations get on it right away. You have been requesting sign language for years, I would make sure you keep record of that. No she doesn't know sign yet, so she won't follow an interpreter, but she needs to start somewhere, and I am sure she will pick it up fast. Kim > That sounds so reasonable to me. Especially after I let them use my FM > for a year. We'll see how things go. I am not looking forward to > this. Remember when we had our big meeting earlier about summer and 2nd > grade? I agonized over so many issues. We got very few concessions for > summer and left the 2nd grade issues for now. Two days before school > starts we're gonna talk about what needs to happen. I know it's gonna > stink. I'll probably leave thinking it's not so bad cuz I'll get some > things, but later it'll sink in that it's just not enough. I've been > asking for the same things since age 3. Yes, she's doing " well " -- but > she needs to do better. It's that old thing of who's standards are you > measuring " well " by -- doing well for a kid who we didn't think would > even talk or doing well for any kid her age?? > > I had contacted a legal advocacy group. All of our issues didn't fit > with their agenda/target issues, but they did give my case to an > advocate who was suppose to work with me on the technology piece. I > didn't hear from her before vacation, left a message for her the other > day, and haven't heard anything yet. You know that's not gonna be much > help if I am able to reach her tomorrow. Argh. > > I've just started reviewing my IEP stuff so you caught me in a > whirlwind. Sorry -- but thanks for the reply and for listening to more. > > Michele W > > Kim Lauger wrote: > >> Basically if it fits in the IEP, all things are possible. >> Some districts are more accomodating with FMs than others. I have >> heard of >> one family who basically said if you don't let us use the FM unit for home >> life, then we will not let you use the aides for school life and you will >> need to buy your own. > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 has her own FM, but another girl tried to use the school FM and could not. I used ours for her when she was on my softball team. I like Kim's idea...sounds like a good compromise to me. Does Aubrie have an interpreter? The school, by ADA law, must provide an interpreter if you ask for one. And, the dance studio, etc. must also try to provide an interpreter if you request one. 's interpreter got free dance lessons for her own daughter by interpreting for ! G On Thursday, August 18, 2005, at 09:51 PM, Michele Westmaas wrote: > Does anybody have the school FM available to be used at extracurricular > activities that are not school-sponsored? Last year, we were spoiled > because we had our own FM system that we let the school use during the > day. We lost her aids and now the new ones are not compatible with the > old FM system. So... we could spend $800 of our own money to get the > additional equipment.... but it seems that the school could loan their > FM for soccer practice, church youth group, dance lessons, and scouts. > These are the noisy environments when she needs that extra link to the > instructor. Has anyone had success in getting this for their child?? > > What about an aide at any of these non-school functions??? What about > an aide at school events -- like the cheerleading camp our cheerleaders > are putting on or the extra art camp the high school teacher does for > the elementary kids?? Does your IEP include community things like > scouts, church groups, sports, dance??? > > Thanks in advance for any input. > > Michele W > Aubrie's mom 7 yrs entering 2nd grade -- IEP on Monday afternoon > > > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome > Canada information and membership, please visit > http://www.chargesyndrome.ca, or email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available > at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 be careful if you send your fm i took my fm to school all the time and once i lost the battery in science class lucly i went back down to look it was still on the floor where it had come out and another time the teacher forgot he had it on and wandered off to the staffroom lucky he came back lol ellen > > Michele, > > I was very disappointed this year when I found out that our dream class > for > the young boys who are deafblind was not going to come together again. It > seemed that Dylan was just getting tacked onto another class, but he > didn't > really learn that way. We have so much here that I know we would fight > tooth and nail for someplace else, and we have so many specialists who > really get deafblindness and to a certain degree CHARGE (although I doubt > anyone pays attention to the CHARGE issues as me), and his intervener is > awesome. BUT finding a teacher who " gets it " has been the challenge, no > matter how good the IEP is. Well it turns out that this teacher is > phenomenal!!!!!!!!!!!! Dylan is being included in the class flow like any > other kid. He is learning to imitate the others during games, learned a > new > calendar system that used different colors of ribbon to represent the > different days of the week, matched with a box with that color ribbon for > the cues for that day, and a lanyard of that ribbon to hang the cues on. > For the first time he is having conversations about yesterday, today, > tomorrow; days of the week; weekend, vacation....... He is doing science > experiments. He is working on getting the concept of names with the kids > in > class during circle time..... Of course it has a lot to do with the state > he is in right now; engaged with the world and like a sponge; with Doe > having years of experience with Dylan and then coming to the CHARGE > conference where she learned so much, then came back with tons of ideas on > how she could adapt different things for Dylan, but the big difference to > me > is the teacher. Without her - as much as Dylan was ready to take off and > Doe had great ideas to implement - there would have just been frustration > at > knowing he could learn and do more. The teacher's set up of the classroom, > expectations for Dylan, calmness with kids making messes while they learn, > making the environmental accommodations Dylan needs and so on is the > difference between doing okay and awesome! The IEP did not change, the > teacher changed! The IEP was being met before, but Dylan is learning now. > I guess my point is pay attention to the IEP, decide what your main one or > two main things are that you must have this year at the very least and > don't > leave until you at least get those. Then when school starts I would make > sure you are okay with the teacher. If that match is not there, if that > teacher does not believe that Aubrie can learn like the others, or is not > able to manage the accommodations get on it right away. > > You have been requesting sign language for years, I would make sure you > keep > record of that. No she doesn't know sign yet, so she won't follow an > interpreter, but she needs to start somewhere, and I am sure she will pick > it up fast. > > Kim > > > > > That sounds so reasonable to me. Especially after I let them use my FM > > for a year. We'll see how things go. I am not looking forward to > > this. Remember when we had our big meeting earlier about summer and 2nd > > grade? I agonized over so many issues. We got very few concessions for > > summer and left the 2nd grade issues for now. Two days before school > > starts we're gonna talk about what needs to happen. I know it's gonna > > stink. I'll probably leave thinking it's not so bad cuz I'll get some > > things, but later it'll sink in that it's just not enough. I've been > > asking for the same things since age 3. Yes, she's doing " well " -- but > > she needs to do better. It's that old thing of who's standards are you > > measuring " well " by -- doing well for a kid who we didn't think would > > even talk or doing well for any kid her age?? > > > > I had contacted a legal advocacy group. All of our issues didn't fit > > with their agenda/target issues, but they did give my case to an > > advocate who was suppose to work with me on the technology piece. I > > didn't hear from her before vacation, left a message for her the other > > day, and haven't heard anything yet. You know that's not gonna be much > > help if I am able to reach her tomorrow. Argh. > > > > I've just started reviewing my IEP stuff so you caught me in a > > whirlwind. Sorry -- but thanks for the reply and for listening to more. > > > > Michele W > > > > Kim Lauger wrote: > > > >> Basically if it fits in the IEP, all things are possible. > >> Some districts are more accomodating with FMs than others. I have > >> heard of > >> one family who basically said if you don't let us use the FM unit for > home > >> life, then we will not let you use the aides for school life and you > will > >> need to buy your own. > > > > > > > > > > > > Membership of this email support groups does not constitute membership > in the > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome > Canada > > information and membership, please visit http://www.chargesyndrome.ca, > or > > email info@.... > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Two years ago Karlee got new hearing aids and we used the state owned FM system at school. We were not allowed to bring the unit home. Last fall we did purchase our own FM microphone. Now we can use it in the car, for church, and other social activities. It also works very well when riding bikes, as I can warn her of traffic. The unit did cost us $1000. It has blue tooth technology and can be used with our cell phone. from IL (Karlee 17) FM out of school > Does anybody have the school FM available to be used at extracurricular > activities that are not school-sponsored? Last year, we were spoiled > because we had our own FM system that we let the school use during the > day. We lost her aids and now the new ones are not compatible with the > old FM system. So... we could spend $800 of our own money to get the > additional equipment.... but it seems that the school could loan their > FM for soccer practice, church youth group, dance lessons, and scouts. > These are the noisy environments when she needs that extra link to the > instructor. Has anyone had success in getting this for their child?? > > What about an aide at any of these non-school functions??? What about > an aide at school events -- like the cheerleading camp our cheerleaders > are putting on or the extra art camp the high school teacher does for > the elementary kids?? Does your IEP include community things like > scouts, church groups, sports, dance??? > > Thanks in advance for any input. > > Michele W > Aubrie's mom 7 yrs entering 2nd grade -- IEP on Monday afternoon > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Kim- Dylan's year sounds so amazing! Aubrie has the same teacher as last year and we love her so that's all good. She's had good teachers and a wonderful aide all along. For us, it's the IEP that's lacking. It's the lack of technology, support for the teacher and aide, signing (although I'm still so confused on that one), etc. I've finally been in touch with our advocate so we'll see how that goes. We talked a bit this am and she is to call me back again later. I just wish it could all go smoothly and well without my having to work so hard at it. Then I wonder if I'm making it too hard and need to just relax and let it be. But I know that would be a disaster in the long run. My fear is what drives me -- fear that the gaps will get larger and that her successes will diminish over time... Michele W > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Aubrie doesn't have an interpreter because we don't use sign. That's another issue. Michele Ginn wrote: > has her own FM, but another girl tried to use the school FM and > could not. I used ours for her when she was on my softball team. > > I like Kim's idea...sounds like a good compromise to me. > > Does Aubrie have an interpreter? The school, by ADA law, must provide > an interpreter if you ask for one. And, the dance studio, etc. must > also try to provide an interpreter if you request one. 's > interpreter got free dance lessons for her own daughter by interpreting > for ! > G > On Thursday, August 18, 2005, at 09:51 PM, Michele Westmaas wrote: > > > Does anybody have the school FM available to be used at extracurricular > > activities that are not school-sponsored? Last year, we were spoiled > > because we had our own FM system that we let the school use during the > > day. We lost her aids and now the new ones are not compatible with the > > old FM system. So... we could spend $800 of our own money to get the > > additional equipment.... but it seems that the school could loan their > > FM for soccer practice, church youth group, dance lessons, and scouts. > > These are the noisy environments when she needs that extra link to the > > instructor. Has anyone had success in getting this for their child?? > > > > What about an aide at any of these non-school functions??? What about > > an aide at school events -- like the cheerleading camp our cheerleaders > > are putting on or the extra art camp the high school teacher does for > > the elementary kids?? Does your IEP include community things like > > scouts, church groups, sports, dance??? > > > > Thanks in advance for any input. > > > > Michele W > > Aubrie's mom 7 yrs entering 2nd grade -- IEP on Monday afternoon > > > > > > > > > > Membership of this email support groups does not constitute membership > > in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome > > Canada information and membership, please visit > > http://www.chargesyndrome.ca, or email info@.... > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available > > at www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 - That's what I was afraid of. I don't understand why the state agency (DSCC) that pays for the aids won't cover an FM system for home use. I get that they won't get one for school use cuz they expect the school to buy that one. Michele Ludwig wrote: > Two years ago Karlee got new hearing aids and we used the state owned FM > system at school. We were not allowed to bring the unit home. Last > fall we > did purchase our own FM microphone. Now we can use it in the car, for > church, and other social activities. It also works very well when riding > bikes, as I can warn her of traffic. > > The unit did cost us $1000. It has blue tooth technology and can be used > with our cell phone. > > from IL (Karlee 17) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 It is okay to recognize those fears. Mamas are wired to protect their babies, so we do pick up on potential dangers to their well-being. You are doing what you can and I agree, just going with the flow, and letting school happen is not likely going to help Aubrie. On the other hand, it is impossible to implement everything at once and do anything well, so do remember it is a process and each thing makes a difference on influencing the path. You have many things that have her heading on the path you want, now focus on adding a couple more! (As for Dylan yes it has been awesome. I was thinking more about it and I realized the difference was really about the teacher going beyond Dylan's IEP to teach him what she was teaching the others, just adapted. That is how it is supposed to be, but was the area where the last teacher just did not know how to do it. The IEP is not a replacement for curriculum, but a tool to help the child access it.) Kim > Kim- > Dylan's year sounds so amazing! Aubrie has the same teacher as last > year and we love her so that's all good. She's had good teachers and a > wonderful aide all along. For us, it's the IEP that's lacking. It's > the lack of technology, support for the teacher and aide, signing > (although I'm still so confused on that one), etc. I've finally been in > touch with our advocate so we'll see how that goes. We talked a bit > this am and she is to call me back again later. I just wish it could > all go smoothly and well without my having to work so hard at it. Then > I wonder if I'm making it too hard and need to just relax and let it > be. But I know that would be a disaster in the long run. My fear is > what drives me -- fear that the gaps will get larger and that her > successes will diminish over time... > > Michele W > >> >> ------------------------------------------------------------------------ >> > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Hi Michele, 's hearing impaired teacher has insisted that the FM goes home for consistency....The school had no problem with that...I made sure I asked during a meeting how it should be used at home...going to the movies,shopping and visits to local parks ...everywhere...She explained that this is all learning....Since our children do not learn incidentally it is necessary to facilitate that....For right now the school is comfortable with it....the agency providing hearing impaired services offered a great deal on a repair contract to ease some of the schools fears about cost for breakage...they really helped the school feel that it was a win/ win situation..... learns and I make sure it is clean and running properly...previously the other agency that was giving services said that they would not support using it at home and then the school became responsible for maintenance...they forgot to open battery door and was going through batteries like crazy ... Also we have it written to 's IEP that we will meet monthly....as a team to discuss if there were any concerns we can address them quickly....It has worked out to be a very useful tool because I was able to invite the second grade teacher to these meetings starting in Feb and she is well versed in ...these meetings are not formal ...they are like a coffee chat...I was lucky enough to find out the 's second grade teacher's cousin is the pediatric an who did the most for in the NICU and has told us each time we see her that knowing has changed her...Small world..... As a team we are all making an effort to work together...I am hoping this will be a great year...i have offered to help the school on non related special ed programs....holiday fairs , being the room mom and on the school building committee...Today they needed a class of second graders to participate during the hiring process for a new position at school...I coordinated 9 children and it worked out beautifully...the kids had fun and the panel was able to see how this person would teach.....All the kids voted for the one they liked most and it was the same teacher the panel selected...worked out for everyone. The principal treated the kids to pizza and they each got a gift certificate for an ice cream.... I am finding that staying involved seems to make the school more comfortable with me...dare I say friendly???? We as a team have decided that it is helpful if goes in a few days before school starts to help the teacher set up her room...this serves a dual purpose... knows where things are ( schedule, his desk etc) and the teacher gets some help setting up...bonus for me I get to shopping for a few hours. is excited to go to second grade....we'll see how this will work this year.... Good luck to you Ellen mom to soon to be 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Ellen- That is so helpful! If you're comfortable with it and have a scanner and the time, could you send me a copy of 's IEP by email (momonamission@...)? I'm so curious to know how other objectives are written etc. and Aubrie seem similar, the same age, academically doing well, so perhaps we can learn from sharing more with each other. I talked at length with our advocate today. What I think we are lacking is documentation in the IEP of many things, like the accommodations to curriculum. The deafblind specialist isn't mentioned in it at all! There are no assistive tech goals. There's a real lack of accountability for the school by not recording things and just basically doing them sort of -- enough to pacify me, I guess. Remind me of what does as far as handwriting and computer keyboarding. Also what is his hearing level? Does he sign? I know I've asked all this before but I need a refresher if you have time. Michele W Ellen Steinbrick wrote: > Hi Michele, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 ellen you are wonderful hey guess what my next door neighbour is called lol ellen > > Ellen- > That is so helpful! If you're comfortable with it and have a scanner > and the time, could you send me a copy of 's IEP by email > (momonamission@...)? I'm so curious to know how other objectives > are written etc. and Aubrie seem similar, the same age, > academically doing well, so perhaps we can learn from sharing more with > each other. > > I talked at length with our advocate today. What I think we are lacking > is documentation in the IEP of many things, like the accommodations to > curriculum. The deafblind specialist isn't mentioned in it at all! > There are no assistive tech goals. There's a real lack of > accountability for the school by not recording things and just basically > doing them sort of -- enough to pacify me, I guess. > > Remind me of what does as far as handwriting and computer > keyboarding. Also what is his hearing level? Does he sign? I know > I've asked all this before but I need a refresher if you have time. > > Michele W > > Ellen Steinbrick wrote: > > > Hi Michele, > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Ellen TOO????? COOL Ellen mom to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Oh Michele, The thing about Patty that I continually want you to know is that she has achieved success and continues to learn. Aubrie will make her way. Bonnie, Mom to Kris 22, Patty CHARGE 20 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Ellen- Thanks for all the info. I do remember now that you've had quite a time with your school. Remind me of the whole sign controversy. Do you want him to sign?? Do you feel he needs it?? I gather he is totally verbal and hears well with his aids?? A regular mail copy of his IEP would be great. No need to go to the trouble of typing all that into an email. Whatever works for you is great for me. I'd just be curious to see what an IEP for a similar kid looks like in another area. Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Ellen, I have yahoo and I will try to add your address Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Michele, Our late director was a very mean and spiteful woman who had an ax to grind with any parent that dared to disagree with her...She told me I really had no say in the whole IEP process...well I found a lawyer and began this journey...She threatened to contact DCF if I did not comply..Well that taught he a life lesson because I did a lot of work with DCF so I called in a few favors and the director was contacted and told the entire school needed to have refresher classes in appropriate reporting and she listed out the fines and other assorted things for making false reports...and a copy went to the board..she was very angry at this time.Then the first HIT spoke up for and disagreed with the director...the director looked for a loop hole in their contract and tried to remove her ...she called HIT's supervisor and was screaming like a lunatic...the HIT went in with a police escort...So much Drama...well she switched to a different agency without my ok we just could not get along.. I demanded an outside independent eval ...we got it and this was a week before she passed away...The results came in and I asked to meet to discuss..she told me she was not sure how I manipulated the evaluation but she was refusing to accept it...I was extremely unprofessional and called her several bad names and told her she would have to answer to a higher power...little did I know it would be so soon...the next night she passed away... During the interim...the board would not give in ...so I changed their contact with ...American School for the Deaf said numerous times that his deafness made no educational impact...and if I refused to sign it was my problem...I did not have a problem with signing however it was not done in a classroom setting nor was it involving ANY lesson in the class......So if his deafness was of no concern educationally why did he need to sign? Why did we need her? She had no answer...She still continued to collect a check for working with ..what was she doing...She also did not like 's first grade teacher...So the principal went in to observe and found that the HIT was not doing anything...so we began the process of requesting a new HIT from a different agency...It finally worked and will have a great year...I hope Can you speak with Aubrie's deaf/blind teacher or hearing impaired teacher? They seem to carry more weight with the schools...she can suggest that the school buy a FM and then recommend that it go home for continuation of learning please send your address to me ...I can send it out Then I'm sure you'll have questions Ellen mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 Aubrie has an FM so that's not the issue. But I don't anticipate them agreeing to letting us use it outside of school. The HIT is useless. The audiologist also would not be a help. I'd need to go out of district and then they won't give those opinions any weight. Michele Westmaas 308 W Jefferson Pittsfield IL 62363 Ellen Steinbrick wrote: > Michele, > Our late director was a very mean and spiteful woman who had an ax to > grind with any parent that dared to disagree with her...She told me I > really had no say in the whole IEP process...well I found a lawyer and > began this journey...She threatened to contact DCF if I did not > comply..Well that taught he a life lesson because I did a lot of work > with DCF so I called in a few favors and the director was contacted > and told the entire school needed to have refresher classes in > appropriate reporting and she listed out the fines and other assorted > things for making false reports...and a copy went to the board..she > was very angry at this time.Then the first HIT spoke up for and > disagreed with the director...the director looked for a loop hole in > their contract and tried to remove her ...she called HIT's supervisor > and was screaming like a lunatic...the HIT went in with a police > escort...So much Drama...well she switched to a different agency > without my ok we just could not get along.. I > demanded an outside independent eval ...we got it and this was a week > before she passed away...The results came in and I asked to meet to > discuss..she told me she was not sure how I manipulated the evaluation > but she was refusing to accept it...I was extremely unprofessional and > called her several bad names and told her she would have to answer to > a higher power...little did I know it would be so soon...the next > night she passed away... > During the interim...the board would not give in ...so I changed their > contact with ...American School for the Deaf said numerous times > that his deafness made no educational impact...and if I refused to > sign it was my problem...I did not have a problem with signing > however it was not done in a classroom setting nor was it involving > ANY lesson in the class......So if his deafness was of no concern > educationally why did he need to sign? > Why did we need her? She had no answer...She still continued to > collect a check for working with ..what was she doing...She also > did not like 's first grade teacher...So the principal went in to > observe and found that the HIT was not doing anything...so we began > the process of requesting a new HIT from a different agency...It > finally worked and will have a great year...I hope > Can you speak with Aubrie's deaf/blind teacher or hearing impaired > teacher? They seem to carry more weight with the schools...she can > suggest that the school buy a FM and then recommend that it go home > for continuation of learning > please send your address to me ...I can send it out > Then I'm sure you'll have questions > Ellen mom to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 Oh, I know how well Patty has ultimately done -- I've seen it! That's why I can use her as an example of what we want for Aubrie... Michele W Turk22082@... wrote: > Oh Michele, > > The thing about Patty that I continually want you to know is that she has > achieved success and continues to learn. > > Aubrie will make her way. > > > Bonnie, Mom to Kris 22, Patty CHARGE 20 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 Michele, I know I will probably frustrate you but how did you get this advocate? Is he/she good? I am asking because not all are. We had a parent Advocacy program in CT that offered information but seldom helped. It was called CPAC- CT parents beware. Our school district had them in their back pocket. I was shocked when our school system put on an informational session for parents one night and a staff member from this program got up, praised the special educational program within the school system and publicly and personally thanked the Special Service Director for her wonderful job and the wonderful services they provide for all their students. Advocacy- I think not! This was when we were going through an incredibly hard time for Patty and this director is evil. I call her the stump, she just doesn't move on anything! We also were going to use other advocates here and there but most were about the fight and not the child. They immediately wanted to jump in such an adversarial way that we didn't use them. Then there were others who were like spaghetti and were useless. Plus, they have to know what programs, evaluations, recommendations or specific modifications are applicable to or for a child based on their individualized needs. The best professional we ever had was a family friend who became blind as an adult. Gosh, he got things done right for Patty. These things are partly why I went through the Partners Training. I guess what I am trying to say is that to remember no matter what you are her best Advocate! Trust yourself. I have a feeling this meeting is going to be good. Go in thinking positive. You might be surprised. By the way, signing (and interveners which is better) also provides Patty with environmental auditory information. And signing makes it easy for her to attend to just the signer and not spend so much time locating the sound, who is speaking, turning to hear them and read their lips, etc. Just another one of the benefits of sign for Patty. Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2005 Report Share Posted August 21, 2005 The advocate is thru Equip for Equality, a state legal firm. They have a website. She seemed good in some ways, not in others. I got some helpful info and advice but also realized her limitations in areas where she didn't have experience. Overall, having her to talk things thru was helpful. She is not available to attend a meeting with me due to budget limitations. And if we went to due process she can't guarantee that EforE would represent us. So... we'll how things go on Monday and go from there. Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Aaaah, Kim, this gave me such a feelgood grin. I am really pleased for Dylan and I am sure you are breathing a sigh of relief. Flo > Well it turns out that this teacher is phenomenal!!!!!!!!!!!! Dylan is being included in the class flow like any other kid. He is learning to imitate the others during games, learned a new calendar system that used different colors of ribbon to represent the different days of the week, matched with a box with that color ribbon for the cues for that day, and a lanyard of that ribbon to hang the cues on. For the first time he is having conversations about yesterday, today, tomorrow; days of the week; weekend, vacation....... He is doing science experiments. He is working on getting the concept of names with the kids in class during circle time..... Of course it has a lot to do with the state he is in right now; engaged with the world and like a sponge; with Doe having years of experience with Dylan and then coming to the CHARGE conference where she learned so much, then came back with tons of ideas on how she could adapt different things for Dylan, but the big difference to me is the teacher. Without her - as much as Dylan was ready to take off and Doe had great ideas to implement - there would have just been frustration at knowing he could learn and do more. The teacher's set up of the classroom, expectations for Dylan, calmness with kids making messes while they learn, making the environmental accommodations Dylan needs and so on is the difference between doing okay and awesome! The IEP did not change, the teacher changed! The IEP was being met before, but Dylan is learning now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Michele, i remember my calisthenics teacher wearing the fm a few times, but i use to be really embarressed about wearing it, i never hardly wore it really FM out of school > Does anybody have the school FM available to be used at extracurricular > activities that are not school-sponsored? Last year, we were spoiled > because we had our own FM system that we let the school use during the > day. We lost her aids and now the new ones are not compatible with the > old FM system. So... we could spend $800 of our own money to get the > additional equipment.... but it seems that the school could loan their > FM for soccer practice, church youth group, dance lessons, and scouts. > These are the noisy environments when she needs that extra link to the > instructor. Has anyone had success in getting this for their child?? > > What about an aide at any of these non-school functions??? What about > an aide at school events -- like the cheerleading camp our cheerleaders > are putting on or the extra art camp the high school teacher does for > the elementary kids?? Does your IEP include community things like > scouts, church groups, sports, dance??? > > Thanks in advance for any input. > > Michele W > Aubrie's mom 7 yrs entering 2nd grade -- IEP on Monday afternoon > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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