Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 I am 53, have SMA and was told that my life expectancy is normal. Live your life and don't worry about when you're going to die, for no one knows that, disabled or able-bodied. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 Happy Belated Birthday Elaine! Later, Mike Briggs Photo Gallery: http://www.pbase.com/photogrif/ " Fish Gotta Swim, I Gotta Dive " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 In a message dated 10/15/2004 10:00:19 AM Eastern Standard Time, angeldelight1989@... writes: i am reaserching my disabilyy sma type 2 does any 1 no the expected age limit on my disabilty i no this may sound a bit harsh but i really wanna no what my life intails i have looked on the internet but i cant seem to find it all it said was 'adulthood posible' plz mail bk love natz PLEASE, PLEASE, PLEASE do NOT listen to the research statistics/BULLSHIT available on the life expectancies for a person diagnosed with ANY TYPE of SMA. I was diagnosed with Type 1, I have been confirmed countless times to have Type 1...I AM 33 YEARS OLD AND HAVE TWO BEAUTIFUL LIL GIRLS THAT I CARRIED AND GAVE BIRTH TO. According to ALL stats out there, my life is IMPOSSIBLE...IT CANNOT HAPPEN...YET, I'M LIVING IT!!! If I would've listened to the doctors, researchers, and the data they swear by I would have been dead at the VERY LEAST 20 years ago, but more than likely over 31 years ago. Nobody knows why...regardless, I'm still here. Please, do EVERYTHING you can to live your life exactly how you've intended/hoped to, while doing your best to not pay too much attention to what research says " should happen... " Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Very well said Amy, I agree completely. Lainie Ames24@... wrote: In a message dated 10/15/2004 10:00:19 AM Eastern Standard Time, angeldelight1989@... writes: i am reaserching my disabilyy sma type 2 does any 1 no the expected age limit on my disabilty i no this may sound a bit harsh but i really wanna no what my life intails i have looked on the internet but i cant seem to find it all it said was 'adulthood posible' plz mail bk love natz PLEASE, PLEASE, PLEASE do NOT listen to the research statistics/BULLSHIT available on the life expectancies for a person diagnosed with ANY TYPE of SMA. I was diagnosed with Type 1, I have been confirmed countless times to have Type 1...I AM 33 YEARS OLD AND HAVE TWO BEAUTIFUL LIL GIRLS THAT I CARRIED AND GAVE BIRTH TO. According to ALL stats out there, my life is IMPOSSIBLE...IT CANNOT HAPPEN...YET, I'M LIVING IT!!! If I would've listened to the doctors, researchers, and the data they swear by I would have been dead at the VERY LEAST 20 years ago, but more than likely over 31 years ago. Nobody knows why...regardless, I'm still here. Please, do EVERYTHING you can to live your life exactly how you've intended/hoped to, while doing your best to not pay too much attention to what research says " should happen... " Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi all, My Asperger/ ADHD/ OCD son is attending his first year in regular ed. kindergarten. His IEP states that he is suposse to have an aide for the whole 6 hours and also haha 30 minutes of OT a week. I signed him up for school on Aug 21st as I was told to be the school and took his IEP and everything. I spoke with the vp of the school about him his needs and my concerns. She advised me at that time that the district (LAUSD) is on a triple A hiring freeze, but that they would work it out. I left feeling like she meant it. So school started September 5th and the first week went by no aide, no OT. Week two and now week three repeat of week one...No aide, no OT. So how long is to long to wait??? My son started off okay..but slowly and surly is showing signs of stress...especially at home were back to tantrums, meltdowns and potty accidents almost everyday! Just when things were getting better after 5 months in BT...he even attended a regular summer camp this year But now I feel like things are falling apart and mostly in part to not having an aid to help regulate the situations that arise at school. I think enough is enough right? I would love to write a letter but am afraid and unsure of how to do it, what to say and the tone to present it in. I would love sample letters (I have looked on wrightlaw.com but still unclear)and advise on what those who have gone before me have done. Do I need an advocate?? a lawyer?(I can't really afford) or a parent mentor? Sorry this was so long...concerned mom Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2006 Report Share Posted September 24, 2006 charmedonecjc <charmedone@...> wrote: This is what we do... ABC SCHOOL DIST ADDRESS CITY, STATE ZIP This letter shall serve as REFUSAL OF CONSENT OF PLACEMENT for (child's name) in any class not supplying sufficient aide support pursuant to (child's name) IEP and procedural safeguards contained within IDEA 2005. Furthermore, I am duly requesting a FAPE placement as soon as possible. I feel that 10 days is reasonable amount of time for a response from (school dist.) I reasonable efforts to correct this inappropriate placement have not commenced within ten days from the date of this letter, I shall seek a due process hearing clarifying the (school dist.) failure to provide a FAPE. (your name) Parent and Guardian of (childs name) Hi all, My Asperger/ ADHD/ OCD son is attending his first year in regular ed. kindergarten. His IEP states that he is suposse to have an aide for the whole 6 hours and also haha 30 minutes of OT a week. I signed him up for school on Aug 21st as I was told to be the school and took his IEP and everything. I spoke with the vp of the school about him his needs and my concerns. She advised me at that time that the district (LAUSD) is on a triple A hiring freeze, but that they would work it out. I left feeling like she meant it. So school started September 5th and the first week went by no aide, no OT. Week two and now week three repeat of week one...No aide, no OT. So how long is to long to wait??? My son started off okay..but slowly and surly is showing signs of stress...especially at home were back to tantrums, meltdowns and potty accidents almost everyday! Just when things were getting better after 5 months in BT...he even attended a regular summer camp this year But now I feel like things are falling apart and mostly in part to not having an aid to help regulate the situations that arise at school. I think enough is enough right? I would love to write a letter but am afraid and unsure of how to do it, what to say and the tone to present it in. I would love sample letters (I have looked on wrightlaw.com but still unclear)and advise on what those who have gone before me have done. Do I need an advocate?? a lawyer?(I can't really afford) or a parent mentor? Sorry this was so long...concerned mom Crystal --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2006 Report Share Posted September 24, 2006 Go to the superintendent with an official letter of complaint. Keep COPIES of all correspondence and if possible (some agree to it, some don't), TAPE all meetings. SUsan This is what we do... > > ABC SCHOOL DIST > ADDRESS > CITY, STATE ZIP > > > This letter shall serve as REFUSAL OF CONSENT OF PLACEMENT for (child's name) in any class not supplying sufficient aide support pursuant to (child's name) IEP and procedural safeguards contained within IDEA 2005. > Furthermore, I am duly requesting a FAPE placement as soon as possible. I feel that 10 days is reasonable amount of time for a response from (school dist.) I reasonable efforts to correct this inappropriate placement have not commenced within ten days from the date of this letter, I shall seek a due process hearing clarifying the (school dist.) failure to provide a FAPE. > (your name) > Parent and Guardian of (childs name) > > Hi all, > > My Asperger/ ADHD/ OCD son is attending his first year in regular > ed. kindergarten. His IEP states that he is suposse to have an aide > for the whole 6 hours and also haha 30 minutes of OT a week. I > signed him up for school on Aug 21st as I was told to be the school > and took his IEP and everything. I spoke with the vp of the school > about him his needs and my concerns. She advised me at that time > that the district (LAUSD) is on a triple A hiring freeze, but that > they would work it out. I left feeling like she meant it. So school > started September 5th and the first week went by no aide, no OT. > Week two and now week three repeat of week one...No aide, no OT. So > how long is to long to wait??? My son started off okay..but slowly > and surly is showing signs of stress...especially at home were back > to tantrums, meltdowns and potty accidents almost everyday! Just > when things were getting better after 5 months in BT...he even > attended a regular summer camp this year But now I feel like > things are falling apart and mostly in part to not having an aid to > help regulate the situations that arise at school. I think enough is > enough right? I would love to write a letter but am afraid and > unsure of how to do it, what to say and the tone to present it in. I > would love sample letters (I have looked on wrightlaw.com but still > unclear)and advise on what those who have gone before me have done. > Do I need an advocate?? a lawyer?(I can't really afford) or a parent > mentor? > Sorry this was so long...concerned mom > > Crystal > > > > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2006 Report Share Posted September 24, 2006 This is fantastic!! Do you or anyone else have any Form style letters such as these.. That will help newbies to the system of education? Perhaps an Introduction letter to teachers about autism and aspergers? -- Re: ( ) i need advise charmedonecjc <charmedone@...> wrote: This is what we do... ABC SCHOOL DIST ADDRESS CITY, STATE ZIP This letter shall serve as REFUSAL OF CONSENT OF PLACEMENT for (child's name) in any class not supplying sufficient aide support pursuant to (child s name) IEP and procedural safeguards contained within IDEA 2005. Furthermore, I am duly requesting a FAPE placement as soon as possible. I feel that 10 days is reasonable amount of time for a response from (school dist.) I reasonable efforts to correct this inappropriate placement have not commenced within ten days from the date of this letter, I shall seek a due process hearing clarifying the (school dist.) failure to provide a FAPE. (your name) Parent and Guardian of (childs name) Hi all, My Asperger/ ADHD/ OCD son is attending his first year in regular ed. kindergarten. His IEP states that he is suposse to have an aide for the whole 6 hours and also haha 30 minutes of OT a week. I signed him up for school on Aug 21st as I was told to be the school and took his IEP and everything. I spoke with the vp of the school about him his needs and my concerns. She advised me at that time that the district (LAUSD) is on a triple A hiring freeze, but that they would work it out. I left feeling like she meant it. So school started September 5th and the first week went by no aide, no OT. Week two and now week three repeat of week one...No aide, no OT. So how long is to long to wait??? My son started off okay..but slowly and surly is showing signs of stress...especially at home were back to tantrums, meltdowns and potty accidents almost everyday! Just when things were getting better after 5 months in BT...he even attended a regular summer camp this year But now I feel like things are falling apart and mostly in part to not having an aid to help regulate the situations that arise at school. I think enough is enough right? I would love to write a letter but am afraid and unsure of how to do it, what to say and the tone to present it in. I would love sample letters (I have looked on wrightlaw.com but still unclear)and advise on what those who have gone before me have done. Do I need an advocate?? a lawyer?(I can't really afford) or a parent mentor? Sorry this was so long...concerned mom Crystal --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Crystal. I would call an IEP meeting and get their refusal for providing services in writing. They cannot use financial or hiring difficulties as an excuse. If you get no response, you could then write a letter and cc the special education director and superintendant. Lastly, you can file a complaint with your state special education office. You need to cite the actual reg #s and how they are violating them (not providing services written into an IEP). See a link below for good letter writing ideas. I would start with Letter #3 Requesting an IEP review. Pam _Parents Guide to Special Education and Related Services_ (http://www.autism-pdd.net/guidep.html) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 This is a long one..but a good one regarding letter writing. Pam _Parent Guides: Communicating Through Letter Writing (PA9)_ (http://www.nichcy.org/pubs/parent/pa9txt.htm) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 sounds like ms to meOn Wed, Jul 8, 2009 at 9:12 AM, vanessa schmidt <vanclaireschmidt@...> wrote: HI I WAS WONDERING IF ANYONE COULD HELP ME WITH SYMPTOMS I HAVE BEEN SUFFERING WITH FOR OVER 5 MONTHS. I HAVE BEEN FOR TESTS AND NOT SURE WHAT TO DO FURTHER. I THINK THE DOCTORS HAVE NOT BEEN A HELPFUL AS THEY SHOULD AND HAD TO LITERALLY FORCE THEM TO DO THESE TESTS AFTER INVESTIGATING ON THE NET. I HAVE PAIN IN SHOULDER AND KNECK. I HAVE SEIZURES. MY THROAT FEELS LIKE IT IS CLOSING UP ALL THE TIME. CANNOT LIE ON MY SIDES AS I GET DIZZY. MY MUSCLES OFTEN FEEL LIKE THEY ARE CRUSHING MY LUNGS. LYING DOWN ON MY BACK SEEMS TO BE PUTTING PRESSURE ON MY BRAIN. AND IT FEELS AS IF MY BRAIN IS NOT GETTING ENOUGH OXYGEN. I HAVE VERY LITTLE MUSCLE STRENGTH. CANNOT WALK FAR AT ALL. I KNOW THIS IS A SUPPORT GROUP. BUT I AM AT MY WITS END AND HOPING SOMEONE COULD POINT ME IN THE RIGHT DIRECTION. GOING FOR AN EMG AND BARRIUM SWALLOW NEXT WEEK. VANESSA   Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 I PRAY THAT THEY GET TO THE BOTTOM OF IT FOR YOU SOON;; HEALING ((HUGS)) DORT From: vanessa schmidt <vanclaireschmidt@...>Subject: I need advise Date: Wednesday, July 8, 2009, 9:12 AM HI I WAS WONDERING IF ANYONE COULD HELP ME WITH SYMPTOMS I HAVE BEEN SUFFERING WITH FOR OVER 5 MONTHS. I HAVE BEEN FOR TESTS AND NOT SURE WHAT TO DO FURTHER. I THINK THE DOCTORS HAVE NOT BEEN A HELPFUL AS THEY SHOULD AND HAD TO LITERALLY FORCE THEM TO DO THESE TESTS AFTER INVESTIGATING ON THE NET. I HAVE PAIN IN SHOULDER AND KNECK. I HAVE SEIZURES. MY THROAT FEELS LIKE IT IS CLOSING UP ALL THE TIME. CANNOT LIE ON MY SIDES AS I GET DIZZY. MY MUSCLES OFTEN FEEL LIKE THEY ARE CRUSHING MY LUNGS. LYING DOWN ON MY BACK SEEMS TO BE PUTTING PRESSURE ON MY BRAIN. AND IT FEELS AS IF MY BRAIN IS NOT GETTING ENOUGH OXYGEN. I HAVE VERY LITTLE MUSCLE STRENGTH. CANNOT WALK FAR AT ALL. I KNOW THIS IS A SUPPORT GROUP. BUT I AM AT MY WITS END AND HOPING SOMEONE COULD POINT ME IN THE RIGHT DIRECTION. GOING FOR AN EMG AND BARRIUM SWALLOW NEXT WEEK. VANESSA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 > Â > THANK YOU! Â > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 > Â > THANK YOU! Â > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 THANK YOU SO MUCH! VANESSA From: vanessa schmidt <vanclaireschmidt@ .co. uk>Subject: I need advise@grou ps.comDate: Wednesday, July 8, 2009, 9:12 AM HI I WAS WONDERING IF ANYONE COULD HELP ME WITH SYMPTOMS I HAVE BEEN SUFFERING WITH FOR OVER 5 MONTHS. I HAVE BEEN FOR TESTS AND NOT SURE WHAT TO DO FURTHER. I THINK THE DOCTORS HAVE NOT BEEN A HELPFUL AS THEY SHOULD AND HAD TO LITERALLY FORCE THEM TO DO THESE TESTS AFTER INVESTIGATING ON THE NET. I HAVE PAIN IN SHOULDER AND KNECK. I HAVE SEIZURES. MY THROAT FEELS LIKE IT IS CLOSING UP ALL THE TIME. CANNOT LIE ON MY SIDES AS I GET DIZZY. MY MUSCLES OFTEN FEEL LIKE THEY ARE CRUSHING MY LUNGS. LYING DOWN ON MY BACK SEEMS TO BE PUTTING PRESSURE ON MY BRAIN. AND IT FEELS AS IF MY BRAIN IS NOT GETTING ENOUGH OXYGEN. I HAVE VERY LITTLE MUSCLE STRENGTH. CANNOT WALK FAR AT ALL. I KNOW THIS IS A SUPPORT GROUP. BUT I AM AT MY WITS END AND HOPING SOMEONE COULD POINT ME IN THE RIGHT DIRECTION. GOING FOR AN EMG AND BARRIUM SWALLOW NEXT WEEK. VANESSA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 YOU ARE SO VERY WELCOME;YOU TAKE CARE OF YOURSELF NOW YA HEAR?? HUGS DORT From: vanessa schmidt <vanclaireschmidt@ .co. uk>Subject: I need advise@grou ps.comDate: Wednesday, July 8, 2009, 9:12 AM HI I WAS WONDERING IF ANYONE COULD HELP ME WITH SYMPTOMS I HAVE BEEN SUFFERING WITH FOR OVER 5 MONTHS. I HAVE BEEN FOR TESTS AND NOT SURE WHAT TO DO FURTHER. I THINK THE DOCTORS HAVE NOT BEEN A HELPFUL AS THEY SHOULD AND HAD TO LITERALLY FORCE THEM TO DO THESE TESTS AFTER INVESTIGATING ON THE NET. I HAVE PAIN IN SHOULDER AND KNECK. I HAVE SEIZURES. MY THROAT FEELS LIKE IT IS CLOSING UP ALL THE TIME. CANNOT LIE ON MY SIDES AS I GET DIZZY. MY MUSCLES OFTEN FEEL LIKE THEY ARE CRUSHING MY LUNGS. LYING DOWN ON MY BACK SEEMS TO BE PUTTING PRESSURE ON MY BRAIN. AND IT FEELS AS IF MY BRAIN IS NOT GETTING ENOUGH OXYGEN. I HAVE VERY LITTLE MUSCLE STRENGTH. CANNOT WALK FAR AT ALL. I KNOW THIS IS A SUPPORT GROUP. BUT I AM AT MY WITS END AND HOPING SOMEONE COULD POINT ME IN THE RIGHT DIRECTION. GOING FOR AN EMG AND BARRIUM SWALLOW NEXT WEEK. VANESSA Quote Link to comment Share on other sites More sharing options...
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