Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Coming up soon (it's 8:10 my time) is a segment about a child with autism on the Today Show. Apparently she was helped with intensive music therapy. I just wanted to let you all know. I'll be watching, unless it comes on after I leave. Maggie ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 I only caught the end but it sounded very encouraging! Did anyone get the name of the therapy? Warm Regards & ASD 11/25/00 in Maine Today Show Coming up soon (it's 8:10 my time) is a segment about a child with autism on the Today Show. Apparently she was helped with intensive music therapy. I just wanted to let you all know. I'll be watching, unless it comes on after I leave. Maggie ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 http://www.msnbc.com/news/909205.asp Alfred Tomatis, who theorized that autistic children have under-developed inner ears that can be re-trained through intensive sound therapy. While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.476 / Virus Database: 273 - Release Date: 4/24/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 http://www.rmlearning.com/listeningorders.htm Where you can order the music cds and other stuff. Brainbuilder software is available also. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.476 / Virus Database: 273 - Release Date: 4/24/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 >> Just for the record: my son's been discharged from all therapy, > receives only OT consults every 3 months now, and is in a typical > school. And he is NOT cured, and he is DEFINITELY autistic. > > I'd like to know how people define 'cured'. Usually, when someone says " cured " , they mean that a child no longer meets the DSM criteria for a diagnosis of autism. Many of these kids continue to have significant challenges however...things like ADHD, DSI, or pragmatic language disorder, and may require support of one kind or another off and on for years. Raena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 I don't know what cured means. The impression I got from watching her on the show is that she considered her daughter " cured " . The show is more then likely slanted anyway to give that impression. Re: Today Show > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 >>bothered by the claims of miracle cures<< I am still new to most of this however I was bothered also. There was a clip on the girl on home video saying " I love you " but she never made eye contact and 4 seems very young to stop all therapy. Just my humble opinion since I am new Warm Regards & ASD 11/25/00 in Maine Re: Today Show > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 >>Just my humble opinion since I am new<< I should add that I will still read all about it because one just never knows LOL...I am pathetic LOL Re: Today Show > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 We stopped all therapy with Greggory at 4 yrs old. Every child is different. At 5 yrs old Alec can say I love you But I would never dream of him being able to stop all therapies at this point. Jacquie H Re: Today Show > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 I think you are right Raena. Most people think of cured as not meeting criteria. As for me I don't think cured is a good word. Like how would I cure Greggory from himself? And Greggory has not met criteria for years and is is still very much autistic. Jacquie H Re: Today Show >> Just for the record: my son's been discharged from all therapy, > receives only OT consults every 3 months now, and is in a typical > school. And he is NOT cured, and he is DEFINITELY autistic. > > I'd like to know how people define 'cured'. Usually, when someone says " cured " , they mean that a child no longer meets the DSM criteria for a diagnosis of autism. Many of these kids continue to have significant challenges however...things like ADHD, DSI, or pragmatic language disorder, and may require support of one kind or another off and on for years. Raena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Jacquie, I am curious...how old is now? What grade is he in? How would you say that the autism affects his life before and after therapy? I don't believe in miracle cures either. I think they give false hope. Maggie ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 >>We stopped all therapy with Greggory at 4 yrs old<< Sorry I am just putting my foot in my mouth alot lately :-(....You know how us new youngin types are...I didn't even know that stopping therapy was an option so young. I have so much to learn....So my goal is for to start K mainstream without an aide...Now I think I have a new goal. Sorry if I offended you. Warm Regards & ASD 11/25/00 in Maine Re: Today Show > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 You are fine! Really/ Nothing much bothers me so never worry of offending me. I am an oldtimer when it comes to autism. LOL Well I have 5 yrs under my belt with a dx for Greggory and 4 yrs with Alec. Every child is different. Every child's needs are different. The last time we all compared ATEC scores Greggory came up with the lowest score and Alec the highest score. Ack! they are my kids. They have the same parents and the same family and the same dx! I know all too well that what is appropriate for some kids is not for all kids. Just something to remember. Especially if you ever feel pressured to do something or not do something for your child. Jacquie H Re: Today Show > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 ----- . Like how would I cure Greggory from himself? You can't and I think that is what bothers me when shows like this say things so broad. The mother does not mention that the child still does x and x but has improved because of this therapy. Instead they call it a miracle cure. I don't believe in cures. I believe in therapy and I believe that with therapy that children can learn to function within normal limits in today's society. They will always be quirky and have some difficulties but the ultimate goal is quality of life. Why can't someone just say the therapy has increase my child's quality of life and We hope that it continues into the future. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.476 / Virus Database: 273 - Release Date: 4/24/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 >>Just something to remember<< Thanks, you are so right. This spectrum is so hard for me to get my head around. I just get to the point where I think I know and then something else comes along. Just seeing my husband's nephew and together showed me how different dealing with each ASD child is. I need to shake the whole " black and white " approach I have always lived by (its an accounting thing)... Warm Regards & ASD 11/25/00 in Maine Re: Today Show > > While I like the idea of music therapy something about the show bothered me. I'm always bothered by the claims of miracle cures. I'm glad the womens daughter has been discharged from all therapy, all services and is now in a typical school. > Just for the record: my son's been discharged from all therapy, receives only OT consults every 3 months now, and is in a typical school. And he is NOT cured, and he is DEFINITELY autistic. I'd like to know how people define 'cured'. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 I don't understand the next question though -- do you mean what was he like before, compared to now? Or do you mean how much did it impact his functioning before and how much does it now? Or was therapy worth it? I want to answer, but I want to be sure of what I'm answering! LOL. Jacquie Yes! All three, lol, if that's okay. Has had any sensory integration therapy as well? I'm pursuing it for --I'm wondering if it's worth it. And by the way, I think it is very impressive for AND you that he is mainstreamed and no longer needing extra services. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 > Jacquie, > > I am curious...how old is now? What grade is he in? How would you > say that the autism affects his life before and after therapy? I don't > believe in miracle cures either. I think they give false hope. is 6 1/2; he'll be 7 at the end of August. He's in first grade. I don't understand the next question though -- do you mean what was he like before, compared to now? Or do you mean how much did it impact his functioning before and how much does it now? Or was therapy worth it? I want to answer, but I want to be sure of what I'm answering! LOL. Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 > I think you are right Raena. Most people think of cured as not meeting criteria. As for me I don't think cured is a good word. Like how would I cure Greggory from himself? And Greggory has not met criteria for years and is is still very much autistic. > Jacquie H Yeah, doesn't fit the classic dsm criteria for autism any longer either. But there's a HUGE gap between him and NT, which is what people claiming 'cure' always seem to be inferring... Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Even if when I go to the ped and she said " she's cured " (not going to happen) I wouldn't stop therapy until 7 at the earliest. Alot of my friends have said that there kids regressed when the " work " at school got harder at this age. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 > I don't believe in cures. I believe in therapy and I believe that with therapy that children can learn to function within normal limits in today's society. They will always be quirky and have some difficulties but the ultimate goal is quality of life. > > Why can't someone just say the therapy has increase my child's quality of life and We hope that it continues into the future. > I think the word 'cure' takes away the feelings of fear that are inherent in our lives. Fear of the future, fear of the unknown, fear of not doing enough, not being enough... To say 'my child is cured' is to say, 'we have nothing more to be afraid of. we've beaten the demon.' Unfortunately, this is cowardly. IMHO, anyway. The strong and courageous are able to say 'he's not cured, but therapy has increased my child's quality of life and we hope it continues into the future.' Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2003 Report Share Posted May 6, 2003 I totally agree! had more trouble with his sensory and social as he moved up in elementary and the stress increased! Sue Re: Today Show > Even if when I go to the ped and she said " she's cured " (not going to happen) > I wouldn't stop therapy until 7 at the earliest. Alot of my friends have > said that there kids regressed when the " work " at school got harder at this > age. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 So when is this going to Air???? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Today Show > > Importance: High > > > > June 9, 2003 > > > > TO: All Chapters > > > > FROM: Pietrasanta > > Vice President of Communications > > and > > Tobin > > Director of Media Relations > > > > RE: Today Show > > > > > > > > We have received word that on Wednesday, June 11, NBC's Today show will be > > airing a segment on the dietary supplement glutathione, and its potential > > application for CF. Glutathione -- in pill form or when aerosolized -- may > > have a therapeutic benefit in the lungs of people with CF. The piece will > > include interviews with Hudson, a mother from Utah who has three > > children with CF, and Dr. Preston , executive vice president for > > medical affairs at the CF Foundation, among others. > > > > It is important to note that glutathione -- while promising -- is still in > > the early stages of development as a treatment for CF and has not been > > approved by the Food and Drug Administration (FDA) for clinical use. Any > > existing data on glutathione and CF is still preliminary. Using therapies > > that are not FDA-approved can present serious health risks to individuals > > with CF and should not be included in a therapeutic regimen without the > > express consent of their CF physician. > > > > Please note that the airdate of this TV segment is subject to change. If > > we learn that it will be rescheduled, we will let you know. > > > > We are in the process of creating a letter to patients and families, as > > well as a Q & A document, that can be distributed to those who inquire about > > glutathione. We will send these to you as soon as possible after the > > segment airs and also will post these materials on our Web site. As > > always, people with CF should consult their CF physician before starting > > any new therapy or halting an existing one. > > > > > > M. Pietrasanta > > Vice President of Communications > > Cystic Fibrosis Foundation > > 6931 Arlington Road > > Bethesda, MD 20814 > > > > (800) FIGHT CF > > Fax: > > Web site <http://www.cff.org> > > E-mail: cpiet@... > > > > Please help the CF Foundation to raise awareness about CF in your > > community and the strides being made toward a cure for this disease, which > > affects tens of thousands of Americans. > > > > Visit www.cff.org or call (800) FIGHT CF to learn more about the services > > and programs available to people with CF. > > > > By contributing your time, talent and enthusiasm to the CF Foundation, you > > can make a difference. Together, we are adding tomorrows every day to the > > lives of people with CF. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 this date has been changed BUT no new date has been given yet . It will be posted Fw: Today Show Importance: High Today Show > > Importance: High > > > > June 9, 2003 > > > > TO: All Chapters > > > > FROM: Pietrasanta > > Vice President of Communications > > and > > Tobin > > Director of Media Relations > > > > RE: Today Show > > > > > > > > We have received word that on Wednesday, June 11, NBC's Today show > > will be > > airing a segment on the dietary supplement glutathione, and its potential > > application for CF. Glutathione -- in pill form or when aerosolized > > -- may > > have a therapeutic benefit in the lungs of people with CF. The piece will > > include interviews with Hudson, a mother from Utah who has > > three children with CF, and Dr. Preston , executive vice > > president for medical affairs at the CF Foundation, among others. > > > > It is important to note that glutathione -- while promising -- is > > still in > > the early stages of development as a treatment for CF and has not > > been approved by the Food and Drug Administration (FDA) for clinical > > use. Any > > existing data on glutathione and CF is still preliminary. Using therapies > > that are not FDA-approved can present serious health risks to individuals > > with CF and should not be included in a therapeutic regimen without > > the express consent of their CF physician. > > > > Please note that the airdate of this TV segment is subject to > > change. If we learn that it will be rescheduled, we will let you > > know. > > > > We are in the process of creating a letter to patients and families, > > as well as a Q & A document, that can be distributed to those who > > inquire about > > glutathione. We will send these to you as soon as possible after the > > segment airs and also will post these materials on our Web site. As > > always, people with CF should consult their CF physician before > > starting any new therapy or halting an existing one. > > > > > > M. Pietrasanta > > Vice President of Communications > > Cystic Fibrosis Foundation > > 6931 Arlington Road > > Bethesda, MD 20814 > > > > (800) FIGHT CF > > Fax: > > Web site <http://www.cff.org> > > E-mail: cpiet@... > > > > Please help the CF Foundation to raise awareness about CF in your > > community and the strides being made toward a cure for this disease, which > > affects tens of thousands of Americans. > > > > Visit www.cff.org or call (800) FIGHT CF to learn more about the services > > and programs available to people with CF. > > > > By contributing your time, talent and enthusiasm to the CF > > Foundation, you > > can make a difference. Together, we are adding tomorrows every day > > to the > > lives of people with CF. > > > > > > > > ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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