Guest guest Posted June 12, 2005 Report Posted June 12, 2005 You’re not alone, Patti. I feel like an outcast even within my own autism community sometime. It seems they are all about ABA, verbal behavior, IEP’s, summer camps, inclusion, sibling support, etc. I’m not saying those things aren’t important, BUT our children are SICK! I feel like screaming it sometime. You can have a perfect IEP, but if they are loaded up with mercury, what difference does it make? Hang in there. God bless the internet, Pamela " Courage is doing what you're afraid to do. There can be no courage unless you're scared. " Eddie Rickenbacker, top US fighter ace, WWI From: EOHarm [mailto:EOHarm ] On Behalf Of pphawkins@... Sent: Sunday, June 12, 2005 2:51 PM EOHarm Subject: question/ friends? Hey y'all, Just want to toss this out there. I have a group of friends, about 25 women, all of whom I've known 15 years or more, and all of whom have the same job I do. OK, don't laugh, but we are basketmakers....I know that's strange, but I design and exhibit and teach around the country. These women live from one coast to the other, and we have had our own email group for years, since we understand each other well and can vent about our job frustrations, etc. We have also supported each other through deaths, divorces, cancer, and many other life crises. I have long truly considered these as among the best friends I have in the world. I tell you all of this, so you can understand what has happened.... Since my son's dx last year, and my " new " life in the world of biomedical treatments and now political activism and " professional book buyer and distributor! " , I have maintained regular contact with these friends. At first they were oh so sorry for my plight, wanted to cheer me up, etc.....but this past week I sent them a long email sharing some of the things I've been doing lately--like our progress with the doctor, the big push on Washington, etc. I was really excited about it and wanted to let them know what was happening--also hoping to get maybe a few of them interested in getting mercury out of vaccines (since that should be everyone's fight, not just the autism community). But I SWEAR I wasn't arrogant, or (too) pushy, I don't think..... just passionate! So far I have not received ONE reply to my email, and these women are on email every single day. The group emails continue to come...with links to knitting sites, and discussions about someone's wedding, and the usual job info, etc....and nothing about what I said. I finally contacted one of these friends individually and asked, did my message get out there, since no one even commented? She told me yes, but after all, it was a " bit intense " , you know, not one of your usual joking, fun emails. I'm a big girl, but my feelings are a bit wounded here. I have found this with other friends, too, whom I used to " do lunch " with, once upon a time, B.A. (before autism) (before activism). I honestly don't have the time for as much " fun stuff " any more, since I seriously have so many more urgent things to deal with these days. I've also decided that I am never going to be comfortable just watching things happen, and sticking my head in the sand, while I live in my own comfortable little world (not that it's very comfortable these days). I would NEVER judge or criticize them or their lives, but they just don't comprehend the passion I have to fight this fight, not only for my son, but for everyone else's kids! OK, I've vented, and I feel better now. It's just kind of strange that I have never met any of you, and yet I bet you understand where I'm coming from. I just wondered--is this a familiar scenario? Thanks for listening. patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 I just had to add our similar recent story... My mom (I am the mother of a 4.5 version of our sweeties)...went to lunch with her best best 30-year girlfriends this week. Started talking about the book, how my dad and husband are getting their silver fillings out, how is improving greatly from chelation treatments... One of them (who is the sweetest woman I've ever met), who has a doctor son and a close cousin dentist, said she wondered " why she was on attack " and ran out of the restaurant crying. Amazing the chords this issue strikes. Let's not even fathom the comment " let's just play devil's advocate and assume it's not the mercury, what if it's some drug your daughter did in college or something? " OH MY GOD are you seriously saying that to my mother?????????? Do you really think that?????????? Thanks for listening. Kim > > Hey y'all, > > Just want to toss this out there. I have a group of friends, about 25 > women, all of whom I've known 15 years or more, and all of whom have the > same job I do. OK, don't laugh, but we are basketmakers....I know that's > strange, but I design and exhibit and teach around the country. These > women live from one coast to the other, and we have had our own email > group for years, since we understand each other well and can vent about > our job frustrations, etc. We have also supported each other through > deaths, divorces, cancer, and many other life crises. I have long truly > considered these as among the best friends I have in the world. I tell > you all of this, so you can understand what has happened.... > > Since my son's dx last year, and my " new " life in the world of biomedical > treatments and now political activism and " professional book buyer and > distributor! " , I have maintained regular contact with these friends. At > first they were oh so sorry for my plight, wanted to cheer me up, > etc.....but this past week I sent them a long email sharing some of the > things I've been doing lately--like our progress with the doctor, the big > push on Washington, etc. I was really excited about it and wanted to let > them know what was happening--also hoping to get maybe a few of them > interested in getting mercury out of vaccines (since that should be > everyone's fight, not just the autism community). But I SWEAR I wasn't > arrogant, or (too) pushy, I don't think..... just passionate! > > So far I have not received ONE reply to my email, and these women are on > email every single day. The group emails continue to come...with links > to knitting sites, and discussions about someone's wedding, and the usual > job info, etc....and nothing about what I said. I finally contacted one > of these friends individually and asked, did my message get out there, > since no one even commented? She told me yes, but after all, it was a > " bit intense " , you know, not one of your usual joking, fun emails. > > I'm a big girl, but my feelings are a bit wounded here. I have found > this with other friends, too, whom I used to " do lunch " with, once upon a > time, B.A. (before autism) (before activism). I honestly don't have the > time for as much " fun stuff " any more, since I seriously have so many > more urgent things to deal with these days. I've also decided that I am > never going to be comfortable just watching things happen, and sticking > my head in the sand, while I live in my own comfortable little world (not > that it's very comfortable these days). I would NEVER judge or criticize > them or their lives, but they just don't comprehend the passion I have to > fight this fight, not only for my son, but for everyone else's kids! > > OK, I've vented, and I feel better now. It's just kind of strange that I > have never met any of you, and yet I bet you understand where I'm coming > from. I just wondered--is this a familiar scenario? > > Thanks for listening. > > patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 > Just want to toss this out there. I have a group of friends, about 25 women, all of whom I've known 15 years or more, and all of whom have the same job I do. ... I finally contacted one of these friends individually and asked, did my message get out there, since no one even commented? She told me yes, but after all, it was a " bit intense " , you know, not one of your usual joking, fun emails. ... I'm a big girl, but my feelings are a bit wounded here. I have found this with other friends, too, whom I used to " do lunch " with, once upon a time, B.A. (before autism) (before activism). I honestly don't have the time for as much " fun stuff " any more, since I seriously have so many more urgent things to deal with these days. I've also decided that I am never going to be comfortable just watching things happen, and sticking my head in the sand, while I live in my own comfortable little world (not that it's very comfortable these days). patti Sometimes I feel bitter about friends and family unable to deal with the politics of mercury-induced autism. But even we autie parents let each other down now and then. However, I too have shunned other activists, thinking " it just isn't my issue. " I never felt motivated to get out of the house and protest the war. I never participated in an AIDS march. Yet nowadays I better understand how an anti-abortion protester feels compelled to try to stop an abhorrent life-threatening medical practice. I think our task is to show friends and family how to do something constructive to help. And repackage the issue in a way that makes it more personal and urgent. Hokkanen Minneapolis Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 ettinashee: I respectfully disagree. Sorry you were offended, but the analogy fits for many of us parents and helps to provide a framework for thinking about this issue and the underlying human attributes contributing to it, attributes that have also been at play in other unfortuante periods of history. I would also remind you of this discussion group's charter: " The purpose is to track and discuss the progress of events as told by Kirby in his book of the same name ... Of keen interest to participants are the issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism. " Those are the things on our minds. So the poster's political/historical reference was on topic. We are also parents and political activists who either have children who are physically quite ill or know those who do. Our children's medical diagnoses typically include CPT codes like: " 270.4 – Disturbances of Sulphur- Bearing Amino-Acid Metabolism " and " 985.0 – Toxic Effect of Mercury and Its Compounds. " (CPT=Current Procedural Terminology as issued by the AMA.) Everyone is welcome here, even to lurk. But these are the topics you will hear discussed and which we hope that you will join us in discussing as we all try to stay on topic. Davey's Dad > > Patti, > > > > I know exactly how you feel ... I have struggled for a metaphor - > the > > only one I can see is the orinary Germans who knew what was > happening to > > the Jews and looked the other way, reassured by the words of a > fascist > > dictator (hey this is starting to be theraputic!) and who didn't > want to > > believe or think about it because the implications were too > grave ..... > > > > Simon > > Rians Dad > > ________________________________ > > > > From: EOHarm [mailto:EOHarm ] On > Behalf > > Of pphawkins@j... > > Sent: 12 June 2005 19:51 > > EOHarm > > Subject: question/ friends? > > > > > > > > Hey y'all, > > > > Just want to toss this out there. I have a group of friends, about > 25 > > women, all of whom I've known 15 years or more, and all of whom > have the > > same job I do. OK, don't laugh, but we are basketmakers....I know > > that's > > strange, but I design and exhibit and teach around the country. > These > > women live from one coast to the other, and we have had our own > email > > group for years, since we understand each other well and can vent > about > > our job frustrations, etc. We have also supported each other > through > > deaths, divorces, cancer, and many other life crises. I have long > truly > > considered these as among the best friends I have in the world. I > tell > > you all of this, so you can understand what has happened.... > > > > Since my son's dx last year, and my " new " life in the world of > > biomedical > > treatments and now political activism and " professional book buyer > and > > distributor! " , I have maintained regular contact with these > friends. At > > first they were oh so sorry for my plight, wanted to cheer me up, > > etc.....but this past week I sent them a long email sharing some of > the > > things I've been doing lately--like our progress with the doctor, > the > > big > > push on Washington, etc. I was really excited about it and wanted > to > > let > > them know what was happening--also hoping to get maybe a few of them > > interested in getting mercury out of vaccines (since that should be > > everyone's fight, not just the autism community). But I SWEAR I > wasn't > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > So far I have not received ONE reply to my email, and these women > are on > > email every single day. The group emails continue to come...with > links > > to knitting sites, and discussions about someone's wedding, and the > > usual > > job info, etc....and nothing about what I said. I finally > contacted one > > of these friends individually and asked, did my message get out > there, > > since no one even commented? She told me yes, but after all, it > was a > > " bit intense " , you know, not one of your usual joking, fun emails. > > > > I'm a big girl, but my feelings are a bit wounded here. I have > found > > this with other friends, too, whom I used to " do lunch " with, once > upon > > a > > time, B.A. (before autism) (before activism). I honestly don't > have the > > time for as much " fun stuff " any more, since I seriously have so > many > > more urgent things to deal with these days. I've also decided that > I am > > never going to be comfortable just watching things happen, and > sticking > > my head in the sand, while I live in my own comfortable little world > > (not > > that it's very comfortable these days). I would NEVER judge or > > criticize > > them or their lives, but they just don't comprehend the passion I > have > > to > > fight this fight, not only for my son, but for everyone else's kids! > > > > OK, I've vented, and I feel better now. It's just kind of strange > that > > I > > have never met any of you, and yet I bet you understand where I'm > > coming > > from. I just wondered--is this a familiar scenario? > > > > Thanks for listening. > > > > patti > > > > > > ________________________________ > > > > Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 , I'm a single (divorced) parent too. Believe me, not only is it difficult with family and friends and non-believing ex-spouses, but wait till you try dating again! I find I can't leave the mercury/vaccine thing alone - it is who I am and what my life is made up of, so it isn't possible soooo...there aren't many second dates........... Michele > > > > Hey y'all, > > > > Just want to toss this out there. I have a group of friends, > about 25 > > women, all of whom I've known 15 years or more, and all of whom > have the > > same job I do. OK, don't laugh, but we are basketmakers....I know > that's > > strange, but I design and exhibit and teach around the country. > These > > women live from one coast to the other, and we have had our own > email > > group for years, since we understand each other well and can vent > about > > our job frustrations, etc. We have also supported each other > through > > deaths, divorces, cancer, and many other life crises. I have long > truly > > considered these as among the best friends I have in the world. I > tell > > you all of this, so you can understand what has happened.... > > > > Since my son's dx last year, and my " new " life in the world of > biomedical > > treatments and now political activism and " professional book buyer > and > > distributor! " , I have maintained regular contact with these > friends. At > > first they were oh so sorry for my plight, wanted to cheer me up, > > etc.....but this past week I sent them a long email sharing some > of the > > things I've been doing lately--like our progress with the doctor, > the big > > push on Washington, etc. I was really excited about it and wanted > to let > > them know what was happening--also hoping to get maybe a few of > them > > interested in getting mercury out of vaccines (since that should be > > everyone's fight, not just the autism community). But I SWEAR I > wasn't > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > So far I have not received ONE reply to my email, and these women > are on > > email every single day. The group emails continue to come...with > links > > to knitting sites, and discussions about someone's wedding, and > the usual > > job info, etc....and nothing about what I said. I finally > contacted one > > of these friends individually and asked, did my message get out > there, > > since no one even commented? She told me yes, but after all, it > was a > > " bit intense " , you know, not one of your usual joking, fun > emails. > > > > I'm a big girl, but my feelings are a bit wounded here. I have > found > > this with other friends, too, whom I used to " do lunch " with, once > upon a > > time, B.A. (before autism) (before activism). I honestly don't > have the > > time for as much " fun stuff " any more, since I seriously have so > many > > more urgent things to deal with these days. I've also decided > that I am > > never going to be comfortable just watching things happen, and > sticking > > my head in the sand, while I live in my own comfortable little > world (not > > that it's very comfortable these days). I would NEVER judge or > criticize > > them or their lives, but they just don't comprehend the passion I > have to > > fight this fight, not only for my son, but for everyone else's > kids! > > > > OK, I've vented, and I feel better now. It's just kind of strange > that I > > have never met any of you, and yet I bet you understand where I'm > coming > > from. I just wondered--is this a familiar scenario? > > > > Thanks for listening. > > > > patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Sounded familiar to me too Patti. Even my family and closest friends did not respond to my recent email. Not one of them. I am not generally the type to be an activist about things but when my 12 year old stepson exhibits the symptoms of mercury poisoning - it hits me in the heart and I cannot sit and be quiet. I can't take the chance that one of them, or someone they know, could have this happen to them too. So, even when I get no response by email, and even when their eyes glaze over and they give me that " there she goes again " look, I tell them what I think. I am not pushy and don't demand anything from them. I give them a little information so as not to overwhelm them and make it known that, if they want more info I have tons and am willing to share. Eventually they will make the connection, when they are ready and in their own good time. You know - " you can lead a horse to water but you can't make him drink " ! Don't give up. One of them will hear you, when they need to. Deb Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 , You know I've sent my family members including my child's father links and articles and they can't be bothered to read them. Some times you just have to stop and go it alone. Michele > > > > > > Hey y'all, > > > > > > Just want to toss this out there. I have a group of friends, about > > 25 > > > women, all of whom I've known 15 years or more, and all of whom > > have the > > > same job I do. OK, don't laugh, but we are basketmakers....I know > > that's > > > strange, but I design and exhibit and teach around the country. > > These > > > women live from one coast to the other, and we have had our own > > email > > > group for years, since we understand each other well and can vent > > about > > > our job frustrations, etc. We have also supported each other > > through > > > deaths, divorces, cancer, and many other life crises. I have long > > truly > > > considered these as among the best friends I have in the world. I > > tell > > > you all of this, so you can understand what has happened.... > > > > > > Since my son's dx last year, and my " new " life in the world of > > biomedical > > > treatments and now political activism and " professional book buyer > > and > > > distributor! " , I have maintained regular contact with these > > friends. At > > > first they were oh so sorry for my plight, wanted to cheer me up, > > > etc.....but this past week I sent them a long email sharing some of > > the > > > things I've been doing lately--like our progress with the doctor, > > the big > > > push on Washington, etc. I was really excited about it and wanted > > to let > > > them know what was happening--also hoping to get maybe a few of them > > > interested in getting mercury out of vaccines (since that should be > > > everyone's fight, not just the autism community). But I SWEAR I > > wasn't > > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > > > So far I have not received ONE reply to my email, and these women > > are on > > > email every single day. The group emails continue to come...with > > links > > > to knitting sites, and discussions about someone's wedding, and the > > usual > > > job info, etc....and nothing about what I said. I finally > > contacted one > > > of these friends individually and asked, did my message get out > > there, > > > since no one even commented? She told me yes, but after all, it > > was a > > > " bit intense " , you know, not one of your usual joking, fun emails. > > > > > > I'm a big girl, but my feelings are a bit wounded here. I have > > found > > > this with other friends, too, whom I used to " do lunch " with, once > > upon a > > > time, B.A. (before autism) (before activism). I honestly don't > > have the > > > time for as much " fun stuff " any more, since I seriously have so > > many > > > more urgent things to deal with these days. I've also decided that > > I am > > > never going to be comfortable just watching things happen, and > > sticking > > > my head in the sand, while I live in my own comfortable little > > world (not > > > that it's very comfortable these days). I would NEVER judge or > > criticize > > > them or their lives, but they just don't comprehend the passion I > > have to > > > fight this fight, not only for my son, but for everyone else's kids! > > > > > > OK, I've vented, and I feel better now. It's just kind of strange > > that I > > > have never met any of you, and yet I bet you understand where I'm > > coming > > > from. I just wondered--is this a familiar scenario? > > > > > > Thanks for listening. > > > > > > patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Oh, yes, definitely , when I first went to your site and saw how great it was, I TOLD them all about it, even the specifics of where to click first and next, etc. so that there would be no difficulty in them seeing what I wanted them to see. I am Chicago born and bred, so I was happy to tell them about these " local " people (you and your associates) who had this really cool site... How do you deal with the blindness, the ignorance, of these people who apparently do not WANT to know the truth? Your site is AWESOME and I thank you for it! > > > > > > Hey y'all, > > > > > > Just want to toss this out there. I have a group of friends, about > > 25 > > > women, all of whom I've known 15 years or more, and all of whom > > have the > > > same job I do. OK, don't laugh, but we are basketmakers....I know > > that's > > > strange, but I design and exhibit and teach around the country. > > These > > > women live from one coast to the other, and we have had our own > > email > > > group for years, since we understand each other well and can vent > > about > > > our job frustrations, etc. We have also supported each other > > through > > > deaths, divorces, cancer, and many other life crises. I have long > > truly > > > considered these as among the best friends I have in the world. I > > tell > > > you all of this, so you can understand what has happened.... > > > > > > Since my son's dx last year, and my " new " life in the world of > > biomedical > > > treatments and now political activism and " professional book buyer > > and > > > distributor! " , I have maintained regular contact with these > > friends. At > > > first they were oh so sorry for my plight, wanted to cheer me up, > > > etc.....but this past week I sent them a long email sharing some of > > the > > > things I've been doing lately--like our progress with the doctor, > > the big > > > push on Washington, etc. I was really excited about it and wanted > > to let > > > them know what was happening--also hoping to get maybe a few of them > > > interested in getting mercury out of vaccines (since that should be > > > everyone's fight, not just the autism community). But I SWEAR I > > wasn't > > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > > > So far I have not received ONE reply to my email, and these women > > are on > > > email every single day. The group emails continue to come...with > > links > > > to knitting sites, and discussions about someone's wedding, and the > > usual > > > job info, etc....and nothing about what I said. I finally > > contacted one > > > of these friends individually and asked, did my message get out > > there, > > > since no one even commented? She told me yes, but after all, it > > was a > > > " bit intense " , you know, not one of your usual joking, fun emails. > > > > > > I'm a big girl, but my feelings are a bit wounded here. I have > > found > > > this with other friends, too, whom I used to " do lunch " with, once > > upon a > > > time, B.A. (before autism) (before activism). I honestly don't > > have the > > > time for as much " fun stuff " any more, since I seriously have so > > many > > > more urgent things to deal with these days. I've also decided that > > I am > > > never going to be comfortable just watching things happen, and > > sticking > > > my head in the sand, while I live in my own comfortable little > > world (not > > > that it's very comfortable these days). I would NEVER judge or > > criticize > > > them or their lives, but they just don't comprehend the passion I > > have to > > > fight this fight, not only for my son, but for everyone else's kids! > > > > > > OK, I've vented, and I feel better now. It's just kind of strange > > that I > > > have never met any of you, and yet I bet you understand where I'm > > coming > > > from. I just wondered--is this a familiar scenario? > > > > > > Thanks for listening. > > > > > > patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Michele, that's the beauty of our site. NO articles to read. Just videos to watch! Much less time consuming and easier to digest... > > > > > > > > Hey y'all, > > > > > > > > Just want to toss this out there. I have a group of friends, > about > > > 25 > > > > women, all of whom I've known 15 years or more, and all of whom > > > have the > > > > same job I do. OK, don't laugh, but we are basketmakers....I > know > > > that's > > > > strange, but I design and exhibit and teach around the > country. > > > These > > > > women live from one coast to the other, and we have had our own > > > email > > > > group for years, since we understand each other well and can > vent > > > about > > > > our job frustrations, etc. We have also supported each other > > > through > > > > deaths, divorces, cancer, and many other life crises. I have > long > > > truly > > > > considered these as among the best friends I have in the > world. I > > > tell > > > > you all of this, so you can understand what has happened.... > > > > > > > > Since my son's dx last year, and my " new " life in the world of > > > biomedical > > > > treatments and now political activism and " professional book > buyer > > > and > > > > distributor! " , I have maintained regular contact with these > > > friends. At > > > > first they were oh so sorry for my plight, wanted to cheer me > up, > > > > etc.....but this past week I sent them a long email sharing > some of > > > the > > > > things I've been doing lately--like our progress with the > doctor, > > > the big > > > > push on Washington, etc. I was really excited about it and > wanted > > > to let > > > > them know what was happening--also hoping to get maybe a few of > them > > > > interested in getting mercury out of vaccines (since that > should be > > > > everyone's fight, not just the autism community). But I SWEAR > I > > > wasn't > > > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > > > > > So far I have not received ONE reply to my email, and these > women > > > are on > > > > email every single day. The group emails continue to > come...with > > > links > > > > to knitting sites, and discussions about someone's wedding, and > the > > > usual > > > > job info, etc....and nothing about what I said. I finally > > > contacted one > > > > of these friends individually and asked, did my message get out > > > there, > > > > since no one even commented? She told me yes, but after all, > it > > > was a > > > > " bit intense " , you know, not one of your usual joking, fun > emails. > > > > > > > > I'm a big girl, but my feelings are a bit wounded here. I have > > > found > > > > this with other friends, too, whom I used to " do lunch " with, > once > > > upon a > > > > time, B.A. (before autism) (before activism). I honestly don't > > > have the > > > > time for as much " fun stuff " any more, since I seriously have > so > > > many > > > > more urgent things to deal with these days. I've also decided > that > > > I am > > > > never going to be comfortable just watching things happen, and > > > sticking > > > > my head in the sand, while I live in my own comfortable little > > > world (not > > > > that it's very comfortable these days). I would NEVER judge or > > > criticize > > > > them or their lives, but they just don't comprehend the passion > I > > > have to > > > > fight this fight, not only for my son, but for everyone else's > kids! > > > > > > > > OK, I've vented, and I feel better now. It's just kind of > strange > > > that I > > > > have never met any of you, and yet I bet you understand where > I'm > > > coming > > > > from. I just wondered--is this a familiar scenario? > > > > > > > > Thanks for listening. > > > > > > > > patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 hey, THANKS! That means a lot... :-) > Oh, yes, definitely , when I first went to your site and saw how > great it was, I TOLD them all about it, even the specifics of where > to click first and next, etc. so that there would be no difficulty in > them seeing what I wanted them to see. I am Chicago born and bred, so > I was happy to tell them about these " local " people (you and your > associates) who had this really cool site... How do you deal with > the blindness, the ignorance, of these people who apparently do not > WANT to know the truth? Your site is AWESOME and I thank you for it! > > Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Patti - you need to drop those friends like a sack of rotten potatoes. Sike, I'm just kidding. I think they just don't understand. They haven't walked in your shoes. They aren't living with it so they can't relate. That's why you need new friends!! It is hard to be friends with someone who is dealing with a " difficult " situation. Those who don't have autistic kids (or even a kid with any disability) don't understand and are uncomfortable. I think they just don't know what to say. I used to have tons of friends too. They are now just " acquaintances " . Only 4 of my friends (really really really good friends) have stuck by me and continue to see me regularly (even though my cutie girl pinches them when they come to visit). I have made many new friends, too. Through my daughter's preschool I've met other parents, through autistic support groups and the awesome people on this list (whom I consider my long distance friends). Here is a different situation but along the same lines: My husband's step-mom lost her adult son to diabetes a few years back. At first everyone showered her with support and mourned with her. Months go by and she is still mourning, but not as many people around for support. As more time goes by people forget and go on with their lives but she is still in agony. He died over 6 years ago and she tells me she thinks about him every day. But no one remembers his birthday or to call her on the day he died just to say " I'm thinking about you " . No one ever says " remember when he (her son) used to.... " because they don't want her to cry or they are " uncomfortable " . It's so sad. I don't mind if she cries in front of me so I make a point of trying to talk about him when I see her. So when you need to vent or rant & rave and be INTENSE you can come here with your new friends!! ~Becky PS: To KAREN - I was thinking of that Veggie Tales song in my head while I was typing this LOL. > OK, I've vented, and I feel better now. It's just kind of strange that I > have never met any of you, and yet I bet you understand where I'm coming > from. I just wondered--is this a familiar scenario? > > Thanks for listening. > > patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Do you mean that Veggie Tales song... " I can be your Frieeeeend! La La La, I can be your frieeeeend! Any day in any weather, we can be friends, I'll share my sweater! " Great stuff! http://www.autismmedia.org/ > ~Becky > > PS: To KAREN - I was thinking of that Veggie Tales song in my head > while I was typing this LOL. > Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 LOL you are funny. That's the one! posted it: EOHarm/message/5187 I had a couple Zima's (and I don't drink!!) so I hope I don't regret my posts in the morning. ~Becky > > ~Becky > > > > PS: To KAREN - I was thinking of that Veggie Tales song in my head > > while I was typing this LOL. > > Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Aasa wrote about her son: He was also kept up to date with his vaccinations and some of these would have occurred around or close to when he was on antibiotics. Geesh! I didn't even remember/think of that until you mentioned you son ending up on antibiotics after his adverse reaction to his vaccine. -------------------------------- Vaccine safety studies are almost always done on HEALTHY children, but then doctors give shots to children who are ill, or on antibiotics. Leaving aside the whole question of mercury or no mercury, this is really, really, bad medical practice. To finish it off, if a baby or child has a reaction the common response from many doctors is denial. Can you tell I'm pissed off? And I don't even have anyone close to me who is vaccine damaged. Deborah Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 I hear ya - my friends are sympathetic, interested in my son's progress, but when I forward NAA emails about buying EOH, for example, I get no response. I really rarely get into the whole mercury-autism thing, but I will say to a friend who is talking about her college age kids getting a flu vaccine " be sure they request a thimerosal free version - order it ahead of time " . I mean, I don't want ANYONE to be injected with mercury. It's been two years since we realized something was wrong - and I still have a hard time talking about " it " without getting choked up. Between working fulltime and managing my son's autism and related interventions I have no free time, no energy, and no money for anything else. > Absolutely. So much of what people talk about seems so trivial to me now. > I often feel like standing up in the middle of a crowded room and yelling, > " Don't you understand! One out of six kid in this country are > poisoned!!!!!!!!!! " Then they'd probably gently escort me out of the room . > . . > > Barb > question/ friends? > > > > > > Hey y'all, > > > > Just want to toss this out there. I have a group of friends, about 25 > > women, all of whom I've known 15 years or more, and all of whom have the > > same job I do. OK, don't laugh, but we are basketmakers....I know that's > > strange, but I design and exhibit and teach around the country. These > > women live from one coast to the other, and we have had our own email > > group for years, since we understand each other well and can vent about > > our job frustrations, etc. We have also supported each other through > > deaths, divorces, cancer, and many other life crises. I have long truly > > considered these as among the best friends I have in the world. I tell > > you all of this, so you can understand what has happened.... > > > > Since my son's dx last year, and my " new " life in the world of biomedical > > treatments and now political activism and " professional book buyer and > > distributor! " , I have maintained regular contact with these friends. At > > first they were oh so sorry for my plight, wanted to cheer me up, > > etc.....but this past week I sent them a long email sharing some of the > > things I've been doing lately--like our progress with the doctor, the big > > push on Washington, etc. I was really excited about it and wanted to let > > them know what was happening--also hoping to get maybe a few of them > > interested in getting mercury out of vaccines (since that should be > > everyone's fight, not just the autism community). But I SWEAR I wasn't > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > So far I have not received ONE reply to my email, and these women are on > > email every single day. The group emails continue to come...with links > > to knitting sites, and discussions about someone's wedding, and the usual > > job info, etc....and nothing about what I said. I finally contacted one > > of these friends individually and asked, did my message get out there, > > since no one even commented? She told me yes, but after all, it was a > > " bit intense " , you know, not one of your usual joking, fun emails. > > > > I'm a big girl, but my feelings are a bit wounded here. I have found > > this with other friends, too, whom I used to " do lunch " with, once upon a > > time, B.A. (before autism) (before activism). I honestly don't have the > > time for as much " fun stuff " any more, since I seriously have so many > > more urgent things to deal with these days. I've also decided that I am > > never going to be comfortable just watching things happen, and sticking > > my head in the sand, while I live in my own comfortable little world (not > > that it's very comfortable these days). I would NEVER judge or criticize > > them or their lives, but they just don't comprehend the passion I have to > > fight this fight, not only for my son, but for everyone else's kids! > > > > OK, I've vented, and I feel better now. It's just kind of strange that I > > have never met any of you, and yet I bet you understand where I'm coming > > from. I just wondered--is this a familiar scenario? > > > > Thanks for listening. > > > > patti > > > > > > > > > > Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 > Absolutely. So much of what people talk about seems so trivial to me now. > I often feel like standing up in the middle of a crowded room and yelling, > " Don't you understand! One out of six kid in this country are > poisoned!!!!!!!!!! " Then they'd probably gently escort me out of the room . > . . > > Barb Right with you. I was at the pool today, it was crowded, and all I could see were a little girl with a bloated belly and tiny arms and legs who wouldn't react when her name was called, a little boy stimming on a water sprayer, a whole lot of morbidly obese adults, a man with a really bad tremor, another two boys handflapping...and I was thinking, Wake up, people! We're all being poisoned! Don't the rest of you see how screwed up this is?? This Cassandra feeling is really hard to live with. At least now we have EoH to give out. Nell Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Patti, I remember when I first got the diagnosis or inkling that something was amiss 6 years ago. I kept thinking - ok we can tackle this - we have good friends and a strong family. HA! HA! HA! What was I thinking? I will say that the friend I have today are some of the bestest people in the whole world. The very bestest. It is always good when you can be in a room with people and not even have to talk - and they get it. Jenn From: EOHarm [mailto:EOHarm ] On Behalf Of Pamela LeighSent: Sunday, June 12, 2005 3:31 PMEOHarm Subject: RE: question/ friends? You’re not alone, Patti. I feel like an outcast even within my own autism community sometime. It seems they are all about ABA, verbal behavior, IEP’s, summer camps, inclusion, sibling support, etc. I’m not saying those things aren’t important, BUT our children are SICK! I feel like screaming it sometime. You can have a perfect IEP, but if they are loaded up with mercury, what difference does it make? Hang in there. God bless the internet, Pamela "Courage is doing what you're afraid to do. There can be no courage unless you're scared." Eddie Rickenbacker, top US fighter ace, WWI From: EOHarm [mailto:EOHarm ] On Behalf Of pphawkins@...Sent: Sunday, June 12, 2005 2:51 PMEOHarm Subject: question/ friends? Hey y'all,Just want to toss this out there. I have a group of friends, about 25women, all of whom I've known 15 years or more, and all of whom have thesame job I do. OK, don't laugh, but we are basketmakers....I know that'sstrange, but I design and exhibit and teach around the country. Thesewomen live from one coast to the other, and we have had our own emailgroup for years, since we understand each other well and can vent aboutour job frustrations, etc. We have also supported each other throughdeaths, divorces, cancer, and many other life crises. I have long trulyconsidered these as among the best friends I have in the world. I tellyou all of this, so you can understand what has happened....Since my son's dx last year, and my "new" life in the world of biomedicaltreatments and now political activism and "professional book buyer anddistributor!", I have maintained regular contact with these friends. Atfirst they were oh so sorry for my plight, wanted to cheer me up,etc.....but this past week I sent them a long email sharing some of thethings I've been doing lately--like our progress with the doctor, the bigpush on Washington, etc. I was really excited about it and wanted to letthem know what was happening--also hoping to get maybe a few of theminterested in getting mercury out of vaccines (since that should beeveryone's fight, not just the autism community). But I SWEAR I wasn'tarrogant, or (too) pushy, I don't think..... just passionate! So far I have not received ONE reply to my email, and these women are onemail every single day. The group emails continue to come...with linksto knitting sites, and discussions about someone's wedding, and the usualjob info, etc....and nothing about what I said. I finally contacted oneof these friends individually and asked, did my message get out there,since no one even commented? She told me yes, but after all, it was a"bit intense", you know, not one of your usual joking, fun emails. I'm a big girl, but my feelings are a bit wounded here. I have foundthis with other friends, too, whom I used to "do lunch" with, once upon atime, B.A. (before autism) (before activism). I honestly don't have thetime for as much "fun stuff" any more, since I seriously have so manymore urgent things to deal with these days. I've also decided that I amnever going to be comfortable just watching things happen, and stickingmy head in the sand, while I live in my own comfortable little world (notthat it's very comfortable these days). I would NEVER judge or criticizethem or their lives, but they just don't comprehend the passion I have tofight this fight, not only for my son, but for everyone else's kids!OK, I've vented, and I feel better now. It's just kind of strange that Ihave never met any of you, and yet I bet you understand where I'm comingfrom. I just wondered--is this a familiar scenario?Thanks for listening.patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 I'm not " there " yet....but figured dating and autism treatment might be interesting.....thanks for the heads-up.... ps--If he's not as obsessed as me about my daughter and my fight to heal her and get the word out...then he is " history " in my book.... > > > > > > Hey y'all, > > > > > > Just want to toss this out there. I have a group of friends, > > about 25 > > > women, all of whom I've known 15 years or more, and all of whom > > have the > > > same job I do. OK, don't laugh, but we are basketmakers....I > know > > that's > > > strange, but I design and exhibit and teach around the country. > > These > > > women live from one coast to the other, and we have had our own > > email > > > group for years, since we understand each other well and can vent > > about > > > our job frustrations, etc. We have also supported each other > > through > > > deaths, divorces, cancer, and many other life crises. I have > long > > truly > > > considered these as among the best friends I have in the world. > I > > tell > > > you all of this, so you can understand what has happened.... > > > > > > Since my son's dx last year, and my " new " life in the world of > > biomedical > > > treatments and now political activism and " professional book > buyer > > and > > > distributor! " , I have maintained regular contact with these > > friends. At > > > first they were oh so sorry for my plight, wanted to cheer me up, > > > etc.....but this past week I sent them a long email sharing some > > of the > > > things I've been doing lately--like our progress with the doctor, > > the big > > > push on Washington, etc. I was really excited about it and > wanted > > to let > > > them know what was happening--also hoping to get maybe a few of > > them > > > interested in getting mercury out of vaccines (since that should > be > > > everyone's fight, not just the autism community). But I SWEAR I > > wasn't > > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > > > So far I have not received ONE reply to my email, and these women > > are on > > > email every single day. The group emails continue to come...with > > links > > > to knitting sites, and discussions about someone's wedding, and > > the usual > > > job info, etc....and nothing about what I said. I finally > > contacted one > > > of these friends individually and asked, did my message get out > > there, > > > since no one even commented? She told me yes, but after all, it > > was a > > > " bit intense " , you know, not one of your usual joking, fun > > emails. > > > > > > I'm a big girl, but my feelings are a bit wounded here. I have > > found > > > this with other friends, too, whom I used to " do lunch " with, > once > > upon a > > > time, B.A. (before autism) (before activism). I honestly don't > > have the > > > time for as much " fun stuff " any more, since I seriously have so > > many > > > more urgent things to deal with these days. I've also decided > > that I am > > > never going to be comfortable just watching things happen, and > > sticking > > > my head in the sand, while I live in my own comfortable little > > world (not > > > that it's very comfortable these days). I would NEVER judge or > > criticize > > > them or their lives, but they just don't comprehend the passion I > > have to > > > fight this fight, not only for my son, but for everyone else's > > kids! > > > > > > OK, I've vented, and I feel better now. It's just kind of > strange > > that I > > > have never met any of you, and yet I bet you understand where > I'm > > coming > > > from. I just wondered--is this a familiar scenario? > > > > > > Thanks for listening. > > > > > > patti Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Thanks Patti, we at FAIR appreciate it! Today, we just added a new banner to our home page to help draw people into our media center more easily: http://www.autismmedia.org/index.html Thanks again! @ FAIR Autism Media > , > > Have been meaning to say that I love your site! It is SO user friendly. > I especially like the fact that the clips are short and to the point, > which I think makes it easier to convince someone to watch them (and no > reading required!). Of course there are still a lot of people who won't > be convinced (yet), but I'm still working on them. > > Thanks! > > patti > > On Mon, 13 Jun 2005 00:33:37 -0000 " Nanstiel " <erik@a...> > writes: > Maybe WE can help you convince your family about this mercury and > biomedical stuff. > > Have them visit this link: http://www.autismmedia.org/media2.html > > @ FAIR Autism Media > http://www.autismmedia.org/ Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Ettina: Bless you, my child, but you are off-topic and now officially on ignore. Take it someplace else, please. Lenny--could you exercise your role as moderator here, please? The delete button is usually at the top right of the keyboard. > > > > Patti, > > > > > > > > I know exactly how you feel ... I have struggled for a > > metaphor - > > > the > > > > only one I can see is the orinary Germans who knew what was > > > happening to > > > > the Jews and looked the other way, reassured by the words of a > > > fascist > > > > dictator (hey this is starting to be theraputic!) and who > didn't > > > want to > > > > believe or think about it because the implications were too > > > grave ..... > > > > > > > > Simon > > > > Rians Dad > > > > ________________________________ > > > > > > > > From: EOHarm [mailto:EOHarm ] On > > > Behalf > > > > Of pphawkins@j... > > > > Sent: 12 June 2005 19:51 > > > > EOHarm > > > > Subject: question/ friends? > > > > > > > > > > > > > > > > Hey y'all, > > > > > > > > Just want to toss this out there. I have a group of friends, > > about > > > 25 > > > > women, all of whom I've known 15 years or more, and all of whom > > > have the > > > > same job I do. OK, don't laugh, but we are basketmakers....I > > know > > > > that's > > > > strange, but I design and exhibit and teach around the > country. > > > These > > > > women live from one coast to the other, and we have had our own > > > email > > > > group for years, since we understand each other well and can > > vent > > > about > > > > our job frustrations, etc. We have also supported each other > > > through > > > > deaths, divorces, cancer, and many other life crises. I have > > long > > > truly > > > > considered these as among the best friends I have in the > world. > > I > > > tell > > > > you all of this, so you can understand what has happened.... > > > > > > > > Since my son's dx last year, and my " new " life in the world of > > > > biomedical > > > > treatments and now political activism and " professional book > > buyer > > > and > > > > distributor! " , I have maintained regular contact with these > > > friends. At > > > > first they were oh so sorry for my plight, wanted to cheer me > up, > > > > etc.....but this past week I sent them a long email sharing > some > > of > > > the > > > > things I've been doing lately--like our progress with the > > doctor, > > > the > > > > big > > > > push on Washington, etc. I was really excited about it and > > wanted > > > to > > > > let > > > > them know what was happening--also hoping to get maybe a few of > > them > > > > interested in getting mercury out of vaccines (since that > should > > be > > > > everyone's fight, not just the autism community). But I SWEAR > I > > > wasn't > > > > arrogant, or (too) pushy, I don't think..... just passionate! > > > > > > > > So far I have not received ONE reply to my email, and these > > women > > > are on > > > > email every single day. The group emails continue to > > come...with > > > links > > > > to knitting sites, and discussions about someone's wedding, and > > the > > > > usual > > > > job info, etc....and nothing about what I said. I finally > > > contacted one > > > > of these friends individually and asked, did my message get out > > > there, > > > > since no one even commented? She told me yes, but after all, > it > > > was a > > > > " bit intense " , you know, not one of your usual joking, fun > > emails. > > > > > > > > I'm a big girl, but my feelings are a bit wounded here. I have > > > found > > > > this with other friends, too, whom I used to " do lunch " with, > > once > > > upon > > > > a > > > > time, B.A. (before autism) (before activism). I honestly don't > > > have the > > > > time for as much " fun stuff " any more, since I seriously have > so > > > many > > > > more urgent things to deal with these days. I've also decided > > that > > > I am > > > > never going to be comfortable just watching things happen, and > > > sticking > > > > my head in the sand, while I live in my own comfortable little > > world > > > > (not > > > > that it's very comfortable these days). I would NEVER judge or > > > > criticize > > > > them or their lives, but they just don't comprehend the passion > > I > > > have > > > > to > > > > fight this fight, not only for my son, but for everyone else's > > kids! > > > > > > > > OK, I've vented, and I feel better now. It's just kind of > > strange > > > that > > > > I > > > > have never met any of you, and yet I bet you understand where > > I'm > > > > coming > > > > from. I just wondered--is this a familiar scenario? > > > > > > > > Thanks for listening. > > > > > > > > patti > > > > > > > > > > > > ________________________________ > > > > > > > > Quote
Guest guest Posted June 13, 2005 Report Posted June 13, 2005 Lenny, there is also a " ban " option at the top right of the board if you are loggin in as moderator. You can click on it and enter the member's name that you want to ban. > > > > > Patti, > > > > > > > > > > I know exactly how you feel ... I have struggled for a > > > metaphor - > > > > the > > > > > only one I can see is the orinary Germans who knew what was > > > > happening to > > > > > the Jews and looked the other way, reassured by the words of > a > > > > fascist > > > > > dictator (hey this is starting to be theraputic!) and who > > didn't > > > > want to > > > > > believe or think about it because the implications were too > > > > grave ..... > > > > > > > > > > Simon > > > > > Rians Dad > > > > > ________________________________ > > > > > > > > > > From: EOHarm [mailto:EOHarm ] > On > > > > Behalf > > > > > Of pphawkins@j... > > > > > Sent: 12 June 2005 19:51 > > > > > EOHarm > > > > > Subject: question/ friends? > > > > > > > > > > > > > > > > > > > > Hey y'all, > > > > > > > > > > Just want to toss this out there. I have a group of > friends, > > > about > > > > 25 > > > > > women, all of whom I've known 15 years or more, and all of > whom > > > > have the > > > > > same job I do. OK, don't laugh, but we are > basketmakers....I > > > know > > > > > that's > > > > > strange, but I design and exhibit and teach around the > > country. > > > > These > > > > > women live from one coast to the other, and we have had our > own > > > > email > > > > > group for years, since we understand each other well and can > > > vent > > > > about > > > > > our job frustrations, etc. We have also supported each > other > > > > through > > > > > deaths, divorces, cancer, and many other life crises. I > have > > > long > > > > truly > > > > > considered these as among the best friends I have in the > > world. > > > I > > > > tell > > > > > you all of this, so you can understand what has happened.... > > > > > > > > > > Since my son's dx last year, and my " new " life in the world > of > > > > > biomedical > > > > > treatments and now political activism and " professional book > > > buyer > > > > and > > > > > distributor! " , I have maintained regular contact with these > > > > friends. At > > > > > first they were oh so sorry for my plight, wanted to cheer > me > > up, > > > > > etc.....but this past week I sent them a long email sharing > > some > > > of > > > > the > > > > > things I've been doing lately--like our progress with the > > > doctor, > > > > the > > > > > big > > > > > push on Washington, etc. I was really excited about it and > > > wanted > > > > to > > > > > let > > > > > them know what was happening--also hoping to get maybe a few > of > > > them > > > > > interested in getting mercury out of vaccines (since that > > should > > > be > > > > > everyone's fight, not just the autism community). But I > SWEAR > > I > > > > wasn't > > > > > arrogant, or (too) pushy, I don't think..... just > passionate! > > > > > > > > > > So far I have not received ONE reply to my email, and these > > > women > > > > are on > > > > > email every single day. The group emails continue to > > > come...with > > > > links > > > > > to knitting sites, and discussions about someone's wedding, > and > > > the > > > > > usual > > > > > job info, etc....and nothing about what I said. I finally > > > > contacted one > > > > > of these friends individually and asked, did my message get > out > > > > there, > > > > > since no one even commented? She told me yes, but after > all, > > it > > > > was a > > > > > " bit intense " , you know, not one of your usual joking, fun > > > emails. > > > > > > > > > > I'm a big girl, but my feelings are a bit wounded here. I > have > > > > found > > > > > this with other friends, too, whom I used to " do lunch " > with, > > > once > > > > upon > > > > > a > > > > > time, B.A. (before autism) (before activism). I honestly > don't > > > > have the > > > > > time for as much " fun stuff " any more, since I seriously > have > > so > > > > many > > > > > more urgent things to deal with these days. I've also > decided > > > that > > > > I am > > > > > never going to be comfortable just watching things happen, > and > > > > sticking > > > > > my head in the sand, while I live in my own comfortable > little > > > world > > > > > (not > > > > > that it's very comfortable these days). I would NEVER judge > or > > > > > criticize > > > > > them or their lives, but they just don't comprehend the > passion > > > I > > > > have > > > > > to > > > > > fight this fight, not only for my son, but for everyone > else's > > > kids! > > > > > > > > > > OK, I've vented, and I feel better now. It's just kind of > > > strange > > > > that > > > > > I > > > > > have never met any of you, and yet I bet you understand > where > > > I'm > > > > > coming > > > > > from. I just wondered--is this a familiar scenario? > > > > > > > > > > Thanks for listening. > > > > > > > > > > patti > > > > > > > > > > > > > > > ________________________________ > > > > > > > > > > Quote
Guest guest Posted June 14, 2005 Report Posted June 14, 2005 " ran hard and fast " I can relate, is if autism was contagious. Kasemodel > > > > > OK, I've vented, and I feel better now. It's just kind of strange > > that I > > > have never met any of you, and yet I bet you understand where I'm > > coming > > > from. I just wondered--is this a familiar scenario? > > > > > > Thanks for listening. > > > > > > patti > > Quote
Guest guest Posted June 14, 2005 Report Posted June 14, 2005 Hi Patti, I have had this type of thing happen several times and it never gets any less disappointing. That is why we surround ourselves with other parents of autistic kids because you know they will understand. Heidi >From: pphawkins@...>Reply-EOHarm >EOHarm >Subject: question/ friends?>Date: Sun, 12 Jun 2005 13:50:34 -0500>>>Hey y'all,>>Just want to toss this out there. I have a group of friends, about 25>women, all of whom I've known 15 years or more, and all of whom have the>same job I do. OK, don't laugh, but we are basketmakers....I know that's>strange, but I design and exhibit and teach around the country. These>women live from one coast to the other, and we have had our own email>group for years, since we understand each other well and can vent about>our job frustrations, etc. We have also supported each other through>deaths, divorces, cancer, and many other life crises. I have long truly>considered these as among the best friends I have in the world. I tell>you all of this, so you can understand what has happened....>>Since my son's dx last year, and my "new" life in the world of biomedical>treatments and now political activism and "professional book buyer and>distributor!", I have maintained regular contact with these friends. At>first they were oh so sorry for my plight, wanted to cheer me up,>etc.....but this past week I sent them a long email sharing some of the>things I've been doing lately--like our progress with the doctor, the big>push on Washington, etc. I was really excited about it and wanted to let>them know what was happening--also hoping to get maybe a few of them>interested in getting mercury out of vaccines (since that should be>everyone's fight, not just the autism community). But I SWEAR I wasn't>arrogant, or (too) pushy, I don't think..... just passionate!>>So far I have not received ONE reply to my email, and these women are on>email every single day. The group emails continue to come...with links>to knitting sites, and discussions about someone's wedding, and the usual>job info, etc....and nothing about what I said. I finally contacted one>of these friends individually and asked, did my message get out there,>since no one even commented? She told me yes, but after all, it was a>"bit intense", you know, not one of your usual joking, fun emails.>>I'm a big girl, but my feelings are a bit wounded here. I have found>this with other friends, too, whom I used to "do lunch" with, once upon a>time, B.A. (before autism) (before activism). I honestly don't have the>time for as much "fun stuff" any more, since I seriously have so many>more urgent things to deal with these days. I've also decided that I am>never going to be comfortable just watching things happen, and sticking>my head in the sand, while I live in my own comfortable little world (not>that it's very comfortable these days). I would NEVER judge or criticize>them or their lives, but they just don't comprehend the passion I have to>fight this fight, not only for my son, but for everyone else's kids!>>OK, I've vented, and I feel better now. It's just kind of strange that I>have never met any of you, and yet I bet you understand where I'm coming>from. I just wondered--is this a familiar scenario?>>Thanks for listening.>>patti>>> Quote
Guest guest Posted June 14, 2005 Report Posted June 14, 2005 I don't know, Heidi. I have had some of these issues even with friends of children with autism. I told one friend earlier I was thinking about sending out a mass email to all of my friends and asking if I need to change deodorant in case it is the smell driving them away. Unfortunately I am in an area where most of the ASD families are not doing biomed and I am still an outcast. It really stinks. I have 3 out of 4 on the spectrum, I am 800 miles away from my family and friends, and I don't want help, I just want someone to laugh with and enjoy their company. I don't think I am a horrible, mean, dislikeable person, so I really don't know what the deal is. elevatordance <elevatordance@...> wrote: Hi Patti, I have had this type of thing happen several times and it never gets any less disappointing. That is why we surround ourselves with other parents of autistic kids because you know they will understand. Heidi >From: pphawkins@...>Reply-EOHarm >EOHarm >Subject: question/ friends?>Date: Sun, 12 Jun 2005 13:50:34 -0500>>>Hey y'all,>>Just want to toss this out there. I have a group of friends, about 25>women, all of whom I've known 15 years or more, and all of whom have the>same job I do. OK, don't laugh, but we are basketmakers....I know that's>strange, but I design and exhibit and teach around the country. These>women live from one coast to the other, and we have had our own email>group for years, since we understand each other well and can vent about>our job frustrations, etc. We have also supported each other through>deaths, divorces, cancer, and many other life crises. I have long truly>considered these as among the best friends I have in the world. I tell>you all of this, so you can understand what has happened....>>Since my son's dx last year, and my "new" life in the world of biomedical>treatments and now political activism and "professional book buyer and>distributor!", I have maintained regular contact with these friends. At>first they were oh so sorry for my plight, wanted to cheer me up,>etc.....but this past week I sent them a long email sharing some of the>things I've been doing lately--like our progress with the doctor, the big>push on Washington, etc. I was really excited about it and wanted to let>them know what was happening--also hoping to get maybe a few of them>interested in getting mercury out of vaccines (since that should be>everyone's fight, not just the autism community). But I SWEAR I wasn't>arrogant, or (too) pushy, I don't think..... just passionate!>>So far I have not received ONE reply to my email, and these women are on>email every single day. The group emails continue to come...with links>to knitting sites, and discussions about someone's wedding, and the usual>job info, etc....and nothing about what I said. I finally contacted one>of these friends individually and asked, did my message get out there,>since no one even commented? She told me yes, but after all, it was a>"bit intense", you know, not one of your usual joking, fun emails.>>I'm a big girl, but my feelings are a bit wounded here. I have found>this with other friends, too, whom I used to "do lunch" with, once upon a>time, B.A. (before autism) (before activism). I honestly don't have the>time for as much "fun stuff" any more, since I seriously have so many>more urgent things to deal with these days. I've also decided that I am>never going to be comfortable just watching things happen, and sticking>my head in the sand, while I live in my own comfortable little world (not>that it's very comfortable these days). I would NEVER judge or criticize>them or their lives, but they just don't comprehend the passion I have to>fight this fight, not only for my son, but for everyone else's kids!>>OK, I've vented, and I feel better now. It's just kind of strange that I>have never met any of you, and yet I bet you understand where I'm coming>from. I just wondered--is this a familiar scenario?>>Thanks for listening.>>patti>>> Quote
Guest guest Posted June 14, 2005 Report Posted June 14, 2005 , it stinks, but I don't think it's your deodorant. In my relatively short time on biomed, I have found that there is a huge gap between those who "do" and those who "don't". The ones only doing ABA think I'm crazy. What part of the country do you live in? patti On Mon, 13 Jun 2005 15:19:14 -0700 (PDT) VanFossen <jensewspa@...> writes: I don't know, Heidi. I have had some of these issues even with friends of children with autism. I told one friend earlier I was thinking about sending out a mass email to all of my friends and asking if I need to change deodorant in case it is the smell driving them away. Unfortunately I am in an area where most of the ASD families are not doing biomed and I am still an outcast. It really stinks. I have 3 out of 4 on the spectrum, I am 800 miles away from my family and friends, and I don't want help, I just want someone to laugh with and enjoy their company. I don't think I am a horrible, mean, dislikeable person, so I really don't know what the deal is. elevatordance <elevatordance@...> wrote: Hi Patti, I have had this type of thing happen several times and it never gets any less disappointing. That is why we surround ourselves with other parents of autistic kids because you know they will understand. Heidi >From: pphawkins@...>Reply-EOHarm >EOHarm >Subject: question/ friends?>Date: Sun, 12 Jun 2005 13:50:34 -0500>>>Hey y'all,>>Just want to toss this out there. I have a group of friends, about 25>women, all of whom I've known 15 years or more, and all of whom have the>same job I do. OK, don't laugh, but we are basketmakers....I know that's>strange, but I design and exhibit and teach around the country. These>women live from one coast to the other, and we have had our own email>group for years, since we understand each other well and can vent about>our job frustrations, etc. We have also supported each other through>deaths, divorces, cancer, and many other life crises. I have long truly>considered these as among the best friends I have in the world. I tell>you all of this, so you can understand what has happened....>>Since my son's dx last year, and my "new" life in the world of biomedical>treatments and now political activism and "professional book buyer and>distributor!", I have maintained regular contact with these friends. At>first they were oh so sorry for my plight, wanted to cheer me up,>etc.....but this past week I sent them a long email sharing some of the>things I've been doing lately--like our progress with the doctor, the big>push on Washington, etc. I was really excited about it and wanted to let>them know what was happening--also hoping to get maybe a few of them>interested in getting mercury out of vaccines (since that should be>everyone's fight, not just the autism community). But I SWEAR I wasn't>arrogant, or (too) pushy, I don't think..... just passionate!>>So far I have not received ONE reply to my email, and these women are on>email every single day. The group emails continue to come...with links>to knitting sites, and discussions about someone's wedding, and the usual>job info, etc....and nothing about what I said. I finally contacted one>of these friends individually and asked, did my message get out there,>since no one even commented? She told me yes, but after all, it was a>"bit intense", you know, not one of your usual joking, fun emails.>>I'm a big girl, but my feelings are a bit wounded here. I have found>this with other friends, too, whom I used to "do lunch" with, once upon a>time, B.A. (before autism) (before activism). I honestly don't have the>time for as much "fun stuff" any more, since I seriously have so many>more urgent things to deal with these days. I've also decided that I am>never going to be comfortable just watching things happen, and sticking>my head in the sand, while I live in my own comfortable little world (not>that it's very comfortable these days). I would NEVER judge or criticize>them or their lives, but they just don't comprehend the passion I have to>fight this fight, not only for my son, but for everyone else's kids!>>OK, I've vented, and I feel better now. It's just kind of strange that I>have never met any of you, and yet I bet you understand where I'm coming>from. I just wondered--is this a familiar scenario?>>Thanks for listening.>>patti>>> Quote
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