Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 I have a new motto that I'd love to have made into a bumper sticker for everyone on Aubrie's IEP team: " All of Aubrie's disabilities put together cannot prevent her from living a successful, independent, productive adult life. But an inadequate education can. " In fact, I may make them all cards with that on the front and the inside message a personal thank you for their contribution to her success. It's so frustrating to me that her education, if executed poorly, could keep her dependent upon us, her brother, or someone else. Not only is that outcome undesirable for the one she would rely on, it's certainly not a worthy goal for her. She is so smart and wonderful. There are many people out there with disabilities of all kinds who make their way quite well. Her dx's don't automatically condemn her to a less-than-full life. But-- without the proper intervention and support -- she may not reach her potential. It's frightening. I am hoping that our eval at Perkins will either confirm that we are on the right track here, give us suggestions to get on the right track, or lead us to a different path if necessary. Isn't the start of a new year frightening? It opens up all of the vulnerabilities for me. Michele W Aubrie's mom 6 yrs grade 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 , Hear, Hear for your bumper sticker!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Michele, There is so much in my heart I want to share with you because of experiences with Patty. The first is that you must always remember to reach for the stars and where there's a will there's a way. Then add to that " it's all about money. " That is except for the staff at Perkins, to them it is about the individual. That in a nutshell is the difference. As you know we moved to MA from CT. My heart is broken by CT. With Patty being borderline in everything (or that is where they continually placed her so they wouldn't have to service her appropriately) she lost so much in her education. After she graduated I learned that many individuals I trusted Patty's education to were really about budgets, cuts, and their opinions. It breaks my heart that I didn't push for better technology for Patty. Especially since that is the avenue she does the best in and where she can have a carreer. I fought and fought for a laptop for her and failed. I should have pushed for a calculator earlier. As long as she could estimate then good. Move on. She had to do so much by hand-pen and paper. UGH. She lost so much on the process that the product was interfered with. And add to that I found to have lost trust in individuals I trusted Patty's entire life to. They actually limited her education and limited her life. Patty still sits here. She has gone through evals from a place called Work Inc. who are fabulous. It appears again technology is an avenue for her to explore for a career. Her life could have been better if I had known then what I know now. I get so tired of felling like " I told you so. " I have lost trust in many specialists but I can say that the entire staff at Perkins (and Outreach staff located at Perkins) are there for the appropriate education of each and every individual. That's all. They are the best. They have the expertise. They don't fudge things, they aren't dishonest, and they are the true experts. They do the right thing for the individual, not the parents, not the budget, not anything but the individual. And then they rejoice in each individual as well. I know Aubrie's life will have a better focus because of their involvement. For those of you in CT, I miss the parents, Ellen you are one of them. Say hi to and the other parents for me. But then always remember in CT it is about money, not the person. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Michele, There is so much in my heart I want to share with you because of experiences with Patty. The first is that you must always remember to reach for the stars and where there's a will there's a way. Then add to that " it's all about money. " That is except for the staff at Perkins, to them it is about the individual. That in a nutshell is the difference. As you know we moved to MA from CT. My heart is broken by CT. With Patty being borderline in everything (or that is where they continually placed her so they wouldn't have to service her appropriately) she lost so much in her education. After she graduated I learned that many individuals I trusted Patty's education to were really about budgets, cuts, and their opinions. It breaks my heart that I didn't push for better technology for Patty. Especially since that is the avenue she does the best in and where she can have a carreer. I fought and fought for a laptop for her and failed. I should have pushed for a calculator earlier. As long as she could estimate then good. Move on. She had to do so much by hand-pen and paper. UGH. She lost so much on the process that the product was interfered with. And add to that I found to have lost trust in individuals I trusted Patty's entire life to. They actually limited her education and limited her life. Patty still sits here. She has gone through evals from a place called Work Inc. who are fabulous. It appears again technology is an avenue for her to explore for a career. Her life could have been better if I had known then what I know now. I get so tired of felling like " I told you so. " I have lost trust in many specialists but I can say that the entire staff at Perkins (and Outreach staff located at Perkins) are there for the appropriate education of each and every individual. That's all. They are the best. They have the expertise. They don't fudge things, they aren't dishonest, and they are the true experts. They do the right thing for the individual, not the parents, not the budget, not anything but the individual. And then they rejoice in each individual as well. I know Aubrie's life will have a better focus because of their involvement. For those of you in CT, I miss the parents, Ellen you are one of them. Say hi to and the other parents for me. But then always remember in CT it is about money, not the person. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Michele, There is so much in my heart I want to share with you because of experiences with Patty. The first is that you must always remember to reach for the stars and where there's a will there's a way. Then add to that " it's all about money. " That is except for the staff at Perkins, to them it is about the individual. That in a nutshell is the difference. As you know we moved to MA from CT. My heart is broken by CT. With Patty being borderline in everything (or that is where they continually placed her so they wouldn't have to service her appropriately) she lost so much in her education. After she graduated I learned that many individuals I trusted Patty's education to were really about budgets, cuts, and their opinions. It breaks my heart that I didn't push for better technology for Patty. Especially since that is the avenue she does the best in and where she can have a carreer. I fought and fought for a laptop for her and failed. I should have pushed for a calculator earlier. As long as she could estimate then good. Move on. She had to do so much by hand-pen and paper. UGH. She lost so much on the process that the product was interfered with. And add to that I found to have lost trust in individuals I trusted Patty's entire life to. They actually limited her education and limited her life. Patty still sits here. She has gone through evals from a place called Work Inc. who are fabulous. It appears again technology is an avenue for her to explore for a career. Her life could have been better if I had known then what I know now. I get so tired of felling like " I told you so. " I have lost trust in many specialists but I can say that the entire staff at Perkins (and Outreach staff located at Perkins) are there for the appropriate education of each and every individual. That's all. They are the best. They have the expertise. They don't fudge things, they aren't dishonest, and they are the true experts. They do the right thing for the individual, not the parents, not the budget, not anything but the individual. And then they rejoice in each individual as well. I know Aubrie's life will have a better focus because of their involvement. For those of you in CT, I miss the parents, Ellen you are one of them. Say hi to and the other parents for me. But then always remember in CT it is about money, not the person. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Bonnie- I feel the same way about the folks working with Aubrie now. I am trusting them and appreciating what they do -- but I am realizing that each of them have limitations and constrictions and their own agendas. It can't be helped. So I have to work around it. Our audiologist was great when I listened to her recommendations and then said I needed to get input from an impartial source as well. She was not offended because she knows that she feels her hands are tied in some ways. It sucks -- but I don't know how to remedy it. I wish I could buy our own FM unit and rent it to the school. Wouldn't that be dandy? Then we could use it outside of school anytime we wanted and they could deal with whatever we choose. The world has made great progress from the " olden days " , but we have a long way to go before the world is set up to do the best for our kids. Even my non-disabled child doesn't always get the best or the right thing because of other people's agendas and limitations. But those things don't have such a great impact on him. The same obstacles will effect him, but they won't make the difference between an independent, fulfilled life and a dependent, frustrated one. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Bonnie- I feel the same way about the folks working with Aubrie now. I am trusting them and appreciating what they do -- but I am realizing that each of them have limitations and constrictions and their own agendas. It can't be helped. So I have to work around it. Our audiologist was great when I listened to her recommendations and then said I needed to get input from an impartial source as well. She was not offended because she knows that she feels her hands are tied in some ways. It sucks -- but I don't know how to remedy it. I wish I could buy our own FM unit and rent it to the school. Wouldn't that be dandy? Then we could use it outside of school anytime we wanted and they could deal with whatever we choose. The world has made great progress from the " olden days " , but we have a long way to go before the world is set up to do the best for our kids. Even my non-disabled child doesn't always get the best or the right thing because of other people's agendas and limitations. But those things don't have such a great impact on him. The same obstacles will effect him, but they won't make the difference between an independent, fulfilled life and a dependent, frustrated one. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Bonnie- I feel the same way about the folks working with Aubrie now. I am trusting them and appreciating what they do -- but I am realizing that each of them have limitations and constrictions and their own agendas. It can't be helped. So I have to work around it. Our audiologist was great when I listened to her recommendations and then said I needed to get input from an impartial source as well. She was not offended because she knows that she feels her hands are tied in some ways. It sucks -- but I don't know how to remedy it. I wish I could buy our own FM unit and rent it to the school. Wouldn't that be dandy? Then we could use it outside of school anytime we wanted and they could deal with whatever we choose. The world has made great progress from the " olden days " , but we have a long way to go before the world is set up to do the best for our kids. Even my non-disabled child doesn't always get the best or the right thing because of other people's agendas and limitations. But those things don't have such a great impact on him. The same obstacles will effect him, but they won't make the difference between an independent, fulfilled life and a dependent, frustrated one. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Michele, Great motto...and so true. I think you SHOULD make them into cards... my new motto I have a new motto that I'd love to have made into a bumper sticker for everyone on Aubrie's IEP team: " All of Aubrie's disabilities put together cannot prevent her from living a successful, independent, productive adult life. But an inadequate education can. " In fact, I may make them all cards with that on the front and the inside message a personal thank you for their contribution to her success. It's so frustrating to me that her education, if executed poorly, could keep her dependent upon us, her brother, or someone else. Not only is that outcome undesirable for the one she would rely on, it's certainly not a worthy goal for her. She is so smart and wonderful. There are many people out there with disabilities of all kinds who make their way quite well. Her dx's don't automatically condemn her to a less-than-full life. But-- without the proper intervention and support -- she may not reach her potential. It's frightening. I am hoping that our eval at Perkins will either confirm that we are on the right track here, give us suggestions to get on the right track, or lead us to a different path if necessary. Isn't the start of a new year frightening? It opens up all of the vulnerabilities for me. Michele W Aubrie's mom 6 yrs grade 1 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Michele, Great motto...and so true. I think you SHOULD make them into cards... my new motto I have a new motto that I'd love to have made into a bumper sticker for everyone on Aubrie's IEP team: " All of Aubrie's disabilities put together cannot prevent her from living a successful, independent, productive adult life. But an inadequate education can. " In fact, I may make them all cards with that on the front and the inside message a personal thank you for their contribution to her success. It's so frustrating to me that her education, if executed poorly, could keep her dependent upon us, her brother, or someone else. Not only is that outcome undesirable for the one she would rely on, it's certainly not a worthy goal for her. She is so smart and wonderful. There are many people out there with disabilities of all kinds who make their way quite well. Her dx's don't automatically condemn her to a less-than-full life. But-- without the proper intervention and support -- she may not reach her potential. It's frightening. I am hoping that our eval at Perkins will either confirm that we are on the right track here, give us suggestions to get on the right track, or lead us to a different path if necessary. Isn't the start of a new year frightening? It opens up all of the vulnerabilities for me. Michele W Aubrie's mom 6 yrs grade 1 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Michele, Great motto...and so true. I think you SHOULD make them into cards... my new motto I have a new motto that I'd love to have made into a bumper sticker for everyone on Aubrie's IEP team: " All of Aubrie's disabilities put together cannot prevent her from living a successful, independent, productive adult life. But an inadequate education can. " In fact, I may make them all cards with that on the front and the inside message a personal thank you for their contribution to her success. It's so frustrating to me that her education, if executed poorly, could keep her dependent upon us, her brother, or someone else. Not only is that outcome undesirable for the one she would rely on, it's certainly not a worthy goal for her. She is so smart and wonderful. There are many people out there with disabilities of all kinds who make their way quite well. Her dx's don't automatically condemn her to a less-than-full life. But-- without the proper intervention and support -- she may not reach her potential. It's frightening. I am hoping that our eval at Perkins will either confirm that we are on the right track here, give us suggestions to get on the right track, or lead us to a different path if necessary. Isn't the start of a new year frightening? It opens up all of the vulnerabilities for me. Michele W Aubrie's mom 6 yrs grade 1 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
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