Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 I mean no disrespect when I say this- and please, understand that I DO my share of trying to inform those outside our community.... but to me, that's not what THIS particular group is about. From my understanding, this is a group for people involved already in the biomedical community to share what is and isn't working with others doing the same thing. To me, this post is better for a group that focuses more on advocating than at the moment recovery. In here, people are posting emergency bulletins to other parents, in need of advice and help and that post may get lost in the shuffle that a post like yours provokes. I understand the need for the world to open their eyes and see autism for what it is. I worry about the days and years to come for my daughter. But at the moment, I am living IN this moment, doing what I can to recover her as much as I can. I come here for ways other parents have tried and succeeded, I come for comfort, reassurance and information.But- this is just my thoughts and I am still a noob here, this just isn't what I thought this group was about. I'm "on board" with McCarthy... I assumed we all were... but, to each his own I guess.To: mb12 valtrex Sent: Tuesday, November 18, 2008 11:41:36 PMSubject: Re: Re: McCarthy Understanding and education is just as important as healing. Mounting up a unified front maybe even more important considering the source of most of our babies tx. Lawmakers in our respective states. In the autism groups and communities there is understanding and educating outside the community is super important. I want my son to go to a Red Sox game and not always have to worry about his stimming, yelping and that people just do not understand. Or, no matter what the activity. Education in a unified manner is huge! This inturn gives hope, understanding, more money for research and more options of valuable effective care! This is a postive conversation. From: Lainna Bracy <kaelainneyahoo (DOT) com>Subject: Re: Re: McCarthyTo: mb12 valtrex@ yahoogroups. comDate: Tuesday, November 18, 2008, 1:16 PM Perfect response, couldn't have made a better point..So, now we need to regroup and not let this negativity invade so much.WE know what's working for our kids.WE know what we are doing CAN be successful.WE need to acknowledge the ones who look at us with scorn or disbelief and MOVE PAST THEM.Our children need us, we should be working on them with each other, not defending the truth.(Not that I don't, but I fight these fights on other sites and keep this for serious business)Sorry, just my two cents. This topic has taken up a lot of posts and energy that could have been spent sharing healing information. From: Dana Read <gdreadcomcast (DOT) net>To: mb12 valtrex@ yahoogroups. comSent: Tuesday, November 18, 2008 9:47:47 AMSubject: RE: Re: McCarthy Early on in her first media blitz she used the word cured, then switched to recovered. Personally, I don't care about what words parents use to describe their children's progress. Some people have a problem with "autistic" vs. "a child with autism". Again, I have my preferences but I am not offended if someone says something different. What is important is that we all support each other in our efforts and our choices and sometimes agree to disagree. Re: McCarthy> > > > I have to say one thing that is frustrating is 's claims of curing her son's autism. Plain and simple, autism is not curable. Symptoms can be treated but autism is not curable. Saying autism is curable, I believe, is irresponsible and gives the impression to the general public that every child with autism is the same and curable. Austims is a spectrum disorder with varying levels of function, symptoms and response to therapy. I believe this message hurts all the organizations that due great work in autism awareness and research.> > This is my thought and frustration. > > Matt> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 I agree. Matt, I don't remember you posting anything ever before? you are sapping people's time and energy here. If you have no interest in either recovering or curing autism, whatever, please leave the group now. no one likes trolls. natasa > > > > > > I'm sorry but I disagree with your post. I have friends who have > > children who have been undiagnosed and you wouldn't know they have > > autism without being told. We are learning so much compared to the > > fridge parent concept from long ago. Some kids can get better with > > diet, supplements etc. Whereas some kids don't respond. We don't know > > the lone " cause " so how can say there is no cure ? I also think > > McCarthy has brought a huge level of awareness to Autism with > > her books and because she feels she has cured her son based on where > > he was and what is viewed as typical is projecting hopefulllness to > > other parents and the autism community not hurtfullness. > > > Sent via BlackBerry by AT & T > > > > > > Re: McCarthy > > > > > > > > > > > > I have to say one thing that is frustrating is 's claims of > > curing her son's autism. Plain and simple, autism is not curable. > > Symptoms can be treated but autism is not curable. Saying autism is > > curable, I believe, is irresponsible and gives the impression to the > > general public that every child with autism is the same and curable. > > Austims is a spectrum disorder with varying levels of function, > > symptoms and response to therapy. I believe this message hurts all > > the organizations that due great work in autism awareness and > > research. > > > > > > This is my thought and frustration. > > > > > > Matt > > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg. com > > Version: 8.0.175 / Virus Database: 270.9.6/1797 - Release Date: > 11/18/2008 11:23 AM > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 That's what I was wanting to hear...that there are people who are recovered without the need for all the management I was starting to wonder if everyone I had always considered recovered might not actually be recovered to the point I had thought they were... Thanks, ! Kari > > > > From: Matt Howes <matthewahowes@ yahoo.com> > > Subject: Re: McCarthy > > To: mb12 valtrex@ yahoogroups. com > > Date: Monday, November 17, 2008, 9:16 PM > > > > > > I have to say one thing that is frustrating is 's claims > > of curing her son's autism. Plain and simple, autism is not > > curable. Symptoms can be treated but autism is not curable. > > Saying autism is curable, I believe, is irresponsible and > > gives the impression to the general public that every child > > with autism is the same and curable. Austims is a spectrum > > disorder with varyi ng levels of function, symptoms and > > response to therapy. I believe this message hurts all the > > organizations that due great work in autism awareness and > > research. > > > > This is my thought and frustration. > > > > Matt > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 I do think this is a valid conversation to have with this group. It's about the goal of everything we're doing, isn't it? To me it seemed at first like a silly point to discuss...cure vs. recovery. but i think we all need to know what exactly our end points are...my husband and I have talked about that a lot. and I was operating under the assumption that the end point was no diet, no supps, functioning neurotypically. and then I was thinking that maybe this is unattainable. because now i'm realizing all the things that are being done to manage the recovery in the three recoveries I'm familiar with. but then cindy described many people she knows of who are, in her opinion, beyond managed recovery and actually cured. That's bold...i don't think she would say it if she didn't stand behind it. this isn't to say that i won't be happy with the end result being some other point along the way. Right now, I'd be thrilled with managed recovery. but then, if I know that it can get better than that, I'll keep fighting for the cure Kari > > > > I'm sorry but I disagree with your post. I have friends who have > children who have been undiagnosed and you wouldn't know they have > autism without being told. We are learning so much compared to the > fridge parent concept from long ago. Some kids can get better with > diet, supplements etc. Whereas some kids don't respond. We don't know > the lone " cause " so how can say there is no cure ? I also think > McCarthy has brought a huge level of awareness to Autism with > her books and because she feels she has cured her son based on where > he was and what is viewed as typical is projecting hopefulllness to > other parents and the autism community not hurtfullness. > > Sent via BlackBerry by AT & T > > > > Re: McCarthy > > > > > > > > I have to say one thing that is frustrating is 's claims of > curing her son's autism. Plain and simple, autism is not curable. > Symptoms can be treated but autism is not curable. Saying autism is > curable, I believe, is irresponsible and gives the impression to the > general public that every child with autism is the same and curable. > Austims is a spectrum disorder with varying levels of function, > symptoms and response to therapy. I believe this message hurts all > the organizations that due great work in autism awareness and > research. > > > > This is my thought and frustration. > > > > Matt > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 Although right now autism is treatable, rather than curable, to make the statement that it is definitely not curable has been disproven throughout history. I believe autism is curable, but we just don't know how to cure it yet. Much of what " experts in the field " believe is theory, NOT fact. You will need to see past these theories in order to accomplish what they say you cannot. Caryn > > From: Matt Howes <matthewahowes@ yahoo.com> > Subject: Re: McCarthy > To: mb12 valtrex@ yahoogroups. com > Date: Monday, November 17, 2008, 9:16 PM > > > > > > > > > > > I have to say one thing that is frustrating is 's claims of curing her son's autism. Plain and simple, autism is not curable. Symptoms can be treated but autism is not curable. Saying autism is curable, I believe, is irresponsible and gives the impression to the general public that every child with autism is the same and curable. Austims is a spectrum disorder with varyi ng levels of function, symptoms and response to therapy. I believe this message hurts all the organizations that due great work in autism awareness and research. > > This is my thought and frustration. > > Matt > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 AMEN Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169 Re: McCarthy> To: mb12 valtrex@ yahoogroups. com> Date: Monday, November 17, 2008, 9:16 PM> > > > > > > > > > > I have to say one thing that is frustrating is 's claims of curing her son's autism. Plain and simple, autism is not curable. Symptoms can be treated but autism is not curable. Saying autism is curable, I believe, is irresponsible and gives the impression to the general public that every child with autism is the same and curable. Austims is a spectrum disorder with varyi ng levels of function, symptoms and response to therapy. I believe this message hurts all the organizations that due great work in autism awareness and research.> > This is my thought and frustration. > > Matt> > No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.9.7/1798 - Release Date: 11/18/2008 8:59 PM Quote Link to comment Share on other sites More sharing options...
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