Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 In a message dated 1/25/04 4:33:30 PM Eastern Standard Time, sjfung@... writes: > We really need the people who AREN'T tired of answering these same > questions over and over to STEP UP and answer them too. > Sue: You are absolutely correct. However, what I try to do, when I have a chance to get on the computer, is read the email & only if I know the answer, look to see if the person's question has been answered before I add yet another email response since we were asked not to clutter up the list unnecessarily. Most of the time, there will be at least one or two answers already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Hi , I agree with much of what you have said, and sure, we all have days when we are impatient reading the same stuff over and over. Personally, I just take a deep breath and log off. Which brings me to another point. You said, " I am sure that it gets tiring to feel like the same questions are asked over and over but, if you feel you are unable to answer a new person's question with patience, please allow someone else to do so. " We really need the people who AREN'T tired of answering these same questions over and over to STEP UP and answer them too. I notice Jody and Sheila and Carol and Patti are working their fingers off trying to answer posts. I know I've slacked off lately, but usually because the conversation is about phenols or something about which I have no knowledge. And yeah, sometimes it's because I'm impatient ... Also as this list gets bigger and bigger, I think you will see more often answers like: " see the Pecanbread website under the heading XYZ. " Because otherwise, the people who DO answer the posts are just going to get worn out and quit, and then where will the list be? Sue (From Pickering) Mom to , 4, formerly? ASD, SCD 10 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 What specific questions have not been cleared up satisfactorily? People owe it to those who must examine nearly 3000 posts this month to have the courtesy to read BTVC, the archives of Pecan Bread & @..., those from Elaine's Children on Lyris Dundee,(if they have access,) and Elaine and Jody's websites. After using the search features on those sites feel free to fire away with SCD questions that cannot be answered there. Constantly criticizing and challenging the diet is non productive. Consider that it is not even two years since it was discovered to be useful for autism. We have the benefit of input from the earliest pioneers on this list as well as the founder and when required, the author. They wouldn't be here answering the same questions, generally with tact and patience if they were not dedicated. Try walking a mile in their shoes. I often see people take advantage of their good nature. ( I am often online at 5:00 a.m. and still tapping away long after dark. It is my choice and my pleasure 99% of the time.) Sheila, Patti and Jody, and many others I mentioned just recently have always given very freely of their time with great patience and often at the sacrifice of family responsibilities. The unique feature of this list is someone is almost always available to answer concerns. However with 600 diverse personalities parenting children with assorted dxs it is not realistic to expect that this will always be the Hallmark Hall of Fame. We all want to be amenable but there can be times when patience is sorely tried. I think the diet and its author should also be treated with kindness and respect. On Sunday, January 25, 2004, at 04:18 PM, BevoMel@... wrote: > Ok, I think it is time to take a step back and remind ourselves to treat > each > other with kindness and respect on this list. > --------- c.frilegh@... Toronto , Celiac SCD 2 years There is no substitute for the right food! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 it is unfortunate that the education system leaves parents with so little notion of research that 10 minutes on google or lyris or the archives of this board seems to be beyond them and creates an expectation of ask and it shall be answered. this is something expereince can teach but few appear to be making the transistion. i can really undertsand elaines frustration with this attitude and having to endlessly answer the same questions,,,,,,,,,,,, there really is a problem with expectations and a lack of reciprocality. gets the list mired down. sorta like a rocket never making critical velocity and escaping the earts orbit, fundamental issues like deep frying cooking methods that are adversly impacting scd's potential are never really explored. the lyris archives with that very intensive input by elaine is the most up to date and best scd refence on the web. http://lyris.dundee.net/read/?forum=elaineschildren message boards are not like real life............. theres no personal atuff that accrues like in real life relatioship, the moment you step off a message board the only thing you take is knowledge so you want to be a bit ruthless about it i only post where theres some benefit of extenstion of knowledge or possibilty of feedback from extension of knowledge or reworking thoughts like this post is for me so a better understanding or way of dealing with something like the way a message baord can suck your day out............ so claims for 'kind' treatment are propaganda which i am more immune to now............ on the other hand theres no call to judge others on this or any issue.......................... emotional travail is part of life and gives energy and makes changes.................. see the nature of knowledge is its changing and moving in fact some proposed nice view of scd101 or things being clear is quite fallcious and not understanding of the possiblites of inversions of opinion necessary to progress forward. in english message boards are rough and thats how they work. > Ok, I think it is time to take a step back and remind ourselves to treat each > other with kindness and respect on this list. I am sure that it gets tiring > to feel like the same questions are asked over and over but, if you feel you > are unable to answer a new person's question with patience, please allow someone > else to do so. It is far too important that these mothers have a place where > they can come and get some things cleared up than it is to point out how many > people have asked their question before & it tires you to repeat yourself, or > the book states such and such clearly, or that you don't like them expressing > their frustration, or even making what might seem to you to be clever harmless > comments that, actually, belittle people. > > Everyone here has a contribution to make & I highly value those adults who > are experienced on the diet to be able to tell me many things that my son cannot > (ie how die off feels, etc). So please understand how much I appreciate you > and your imput when I ask that you try to understand that implementing this > diet is a far different experience for parents with an asd child. The time it > takes to study, understand, research, cook, try try try to get your child to eat > something, watch for reactions, and record such reactions, etc. all the while > managing the life, behaviours, schooling, therapies, doctors and everything > that goes with raising a child on the spectrum is exhausting. There are many > wonderful, amazing, dedicated parents of these children who never even attempt > dietary intervention of any kind because it is too overwhelming a prospect in an > already difficult life. Please, lets not drive away those that are trying it > because we, ourselves, are tired or impatient. > > Once one gets the hang of this diet, as well as an understanding of the > science behind it, it becomes much much easier. Meanwhile, there *are* > inconsistencies that we would be silly to ignore (ie, various foods declared " legal " in > earlier editions and " illegal " in later ones). We simply need to be kinder to > those people who are confused by things that seem so simple and clear cut to us. > > Thanks for listening & I'll get off my soapbox now > A > Max 4.5 (pddnos--scd 5+months) > Mia 2.8 (nt) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Google is not beyond us . We have been asked not to bring a lot of outside web references to the list. That doesn't prevent people from doing their own research. It would be marvelous to have unlimited bandwidth on Yahoo, and unlimited time and resources to pursue every aspect of autism and diet and invite expert panelists for their input. And in an ideal world that' would be possible. However reality decrees priority. > it is unfortunate that the education system leaves parents with so > little notion of research that 10 minutes on google or lyris or the > archives of this board seems to be beyond them and creates an > expectation of ask and it shall be answered. > > this is something expereince can teach but few appear to be making > the transistion. > > i can really undertsand elaines frustration with this attitude and > having to endlessly answer the same questions,,,,,,,,,,,, > > there really is a problem with expectations and a lack of > reciprocality. gets the list mired down. sorta like a rocket never > making critical velocity and escaping the earts orbit, fundamental > issues like deep frying cooking methods that are adversly impacting > scd's potential are never really explored. > > the lyris archives with that very intensive input by elaine is the > most up to date and best scd refence on the web. > > http://lyris.dundee.net/read/?forum=elaineschildren > > message boards are not like real life............. > > theres no personal atuff that accrues like in real life relatioship, > the moment you step off a message board the only thing you take is > knowledge so you want to be a bit ruthless about it > > i only post where theres some benefit of extenstion of knowledge or > possibilty of feedback from extension of knowledge or reworking > thoughts like this post is for me so a better understanding or way of > dealing with something like the way a message baord can suck your day > out............ > > so claims for 'kind' treatment are propaganda which i am more immune > to now............ > > on the other hand theres no call to judge others on this or any > issue.......................... > > emotional travail is part of life and gives energy and makes > changes.................. > > see the nature of knowledge is its changing and moving in fact some > proposed nice view of scd101 or things being clear is quite fallcious > and not understanding of the possiblites of inversions of opinion > necessary to progress forward. > > in english message boards are rough and thats how they work. > > > > > > > > > > Ok, I think it is time to take a step back and remind ourselves to > treat each > > other with kindness and respect on this list. I am sure that it > gets tiring > > to feel like the same questions are asked over and over but, if you > feel you > > are unable to answer a new person's question with patience, please > allow someone > > else to do so. It is far too important that these mothers have a > place where > > they can come and get some things cleared up than it is to point > out how many > > people have asked their question before & it tires you to repeat > yourself, or > > the book states such and such clearly, or that you don't like them > expressing > > their frustration, or even making what might seem to you to be > clever harmless > > comments that, actually, belittle people. > > > > Everyone here has a contribution to make & I highly value those > adults who > > are experienced on the diet to be able to tell me many things that > my son cannot > > (ie how die off feels, etc). So please understand how much I > appreciate you > > and your imput when I ask that you try to understand that > implementing this > > diet is a far different experience for parents with an asd child. > The time it > > takes to study, understand, research, cook, try try try to get your > child to eat > > something, watch for reactions, and record such reactions, etc. all > the while > > managing the life, behaviours, schooling, therapies, doctors and > everything > > that goes with raising a child on the spectrum is exhausting. There > are many > > wonderful, amazing, dedicated parents of these children who never > even attempt > > dietary intervention of any kind because it is too overwhelming a > prospect in an > > already difficult life. Please, lets not drive away those that are > trying it > > because we, ourselves, are tired or impatient. > > > > Once one gets the hang of this diet, as well as an understanding of > the > > science behind it, it becomes much much easier. Meanwhile, there > *are* > > inconsistencies that we would be silly to ignore (ie, various foods > declared " legal " in > > earlier editions and " illegal " in later ones). We simply need to be > kinder to > > those people who are confused by things that seem so simple and > clear cut to us. > > > > Thanks for listening & I'll get off my soapbox now > > A > > Max 4.5 (pddnos--scd 5+months) > > Mia 2.8 (nt) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 , I appreciated your post. I have an ASD child, and what if someone doesn't know if it's the eggplant or the transdermal glutathione cream that caused the rash? If we utterly censure people for talking about all the other stuff ASD kids are involved with, what if someone takes out a good food erroneously? Supplements, etc., are so integral to the bio-med components to which these kids are exposed. My humble suggestion would be, after thoroughly checking BTVC & pecanbread.com & the BTVC web search engine, to ask people to e-mail responses privately if a question contains something that by the rules of the list is Off Topic, put OT in the subject line, and list direct e-mail addresses under your name. But not to make ASD kids' parents feel ill-at-ease, because of not wanting their children to miss out on the benefits of this diet. Elaine gave terrific advice a little while back, to the effect that as the gut heals, make sure, for example, to think about adjusting how much B-12 you are giving (ie healing may alter the amount absorbed). It's valuable to be able to draw from the body of experience of Elaine and the moderators, the older list members, and all of the parents of the ASD kids. Teri Ian 5.5; ASD; SCD 10/03 ActionforAngels@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Ok - I'm one of the mom's that was " hammered " for lack of a better term. I was going to email off list in reference to this because the listserv is not the place for this type of behavior. I fight schools,doctors, and family members about the interventions I'm doing or have done on a regular basis - I do not need to have battles with people who are knowledgeable about something I'm trying to learn, and can help and want to help my daughter. I agree very much with what has been said about impatience and list kindness. I'm on a few lists and I read about 1000 or more emails per day, all the while trying to learn and become a more proficicient force in my daughter's recovery, I get frustrated as well. I have also gotten off lists simply because the bashing could not be controlled - not saying that has gone on here, just making a point. A few of the lists I'm on have people who answer questions and they post URL's for websites as thier answers. This could be a solution that could help. Sometimes when you read a ton of info, it becomes intermingled and you may forget where you've seen it or exactly what it said. I'm very new to this diet, I've been battling her autism for 1.5 years. When I started she was so severe we couldn't leave the house, nonverbal (other than screaming), aggressive, couldn't feed herself, and had so many health probs they are too long to post. I have learned through this journey that it is a whole lot easier to get it right the first time, rather than backtracking after several weeks or months - I've had to do this and feel that it costs my child precious time she doesn't have. I would like everyone to know that I've read the book (twice), I carry a copy of the legal/illegal list and the book with me to the grocery store, I read messages and flag them, move them to specific folders so that I can always go back to them if I need to. " well crap " is nothing more than my frustration of not being able to get it right on my end, I'm trying diligently and sometimes I feel that I'm not doing enough. If my questions frustrate people I am truly sorry, but I want to get this right so that my child will have the healed, healthy gut she is supposed to. I'm counting on many things to come around once this happens - she might become potty trained!!! Yes, this makes me very excited, so please have a bit of patience and remember you were there once..... I will say no more on this subject, because it has taken up too much of my time, and time is a precious commodity in my house. Thanks for listening. Karyn Hi , I agree with much of what you have said, and sure, we all have days when we are impatient reading the same stuff over and over. Personally, I just take a deep breath and log off. Which brings me to another point. You said, " I am sure that it gets tiring to feel like the same questions are asked over and over but, if you feel you are unable to answer a new person's question with patience, please allow someone else to do so. " We really need the people who AREN'T tired of answering these same questions over and over to STEP UP and answer them too. I notice Jody and Sheila and Carol and Patti are working their fingers off trying to answer posts. I know I've slacked off lately, but usually because the conversation is about phenols or something about which I have no knowledge. And yeah, sometimes it's because I'm impatient ... Also as this list gets bigger and bigger, I think you will see more often answers like: " see the Pecanbread website under the heading XYZ. " Because otherwise, the people who DO answer the posts are just going to get worn out and quit, and then where will the list be? Sue (From Pickering) Mom to , 4, formerly? ASD, SCD 10 months For information on the Specific Carbohydrate Diet, please read the following websites: http://www.breakingtheviciouscycle.info and http://www.pecanbread.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 ---I'm new & hesitate to chime in here, but I noticed how this list was differen't from the first time I started reading posts. I was on a list before this one & became very knowledgeable about the topics we all discussed. I answered alot of questions & alot of them were questions that I really felt could have been answered easily if the person had only taken the time to look around alittle. But i like to help people & know that sometimes you don't have the time or patience to read things again or maybe you didn't quite understand it when you did find the answer, so I took the time to help because I know how it feels to have been there. It seems to me that if you don't want to answer a question, or don't like the question, think it's a dumb one or whatever, Then instead of giving a negative response, don't respond at all. Also if you don't agree with what someone is choosing to do on the diet then just say, " I don't agree with what your doing, or using that food. " Sometimes people on the spectrum are alittle more plain spoken, I think if that's the case than we need to not take it personally. They don't mean it the way it might sound alot of time & we need not be so touchy with them. But down right rudeness is just not called for. Expecially when we are supposed to be here helping each other. We have the opportunity to help others learn & hopefully those people will take what they learn from you & use it to help other people. This list belongs to all of us & I think we should all work together to make it a kind & helpful place. We're not here to one up each other but to receive & extend knowlege in a kind & understanding manner. Or else why would anyone want to be here? As far as people leaving because of rudeness, I think that if we just ignore unkind words & work together we can make this a better place. I'm sure that's what Elaine would want. Cristy Mother to Hope, ASD SCD 1 week In pecanbread , " Karyn " <klmitch@c...> wrote: > > Ok - I'm one of the mom's that was " hammered " for lack of a better term. I was going to email off list in reference to this because the listserv is not the place for this type of behavior. I fight schools,doctors, and family members about the interventions I'm doing or have done on a regular basis - I do not need to have battles with people who are knowledgeable about something I'm trying to learn, and can help and want to help my daughter. > > I agree very much with what has been said about impatience and list kindness. I'm on a few lists and I read about 1000 or more emails per day, all the while trying to learn and become a more proficicient force in my daughter's recovery, I get frustrated as well. I have also gotten off lists simply because the bashing could not be controlled - not saying that has gone on here, just making a point. > A few of the lists I'm on have people who answer questions and they post URL's for websites as thier answers. This could be a solution that could help. Sometimes when you read a ton of info, it becomes intermingled and you may forget where you've seen it or exactly what it said. > > I'm very new to this diet, I've been battling her autism for 1.5 years. When I started she was so severe we couldn't leave the house, nonverbal (other than screaming), aggressive, couldn't feed herself, and had so many health probs they are too long to post. I have learned through this journey that it is a whole lot easier to get it right the first time, rather than backtracking after several weeks or months - I've had to do this and feel that it costs my child precious time she doesn't have. I would like everyone to know that I've read the book (twice), I carry a copy of the legal/illegal list and the book with me to the grocery store, I read messages and flag them, move them to specific folders so that I can always go back to them if I need to. " well crap " is nothing more than my frustration of not being able to get it right on my end, I'm trying diligently and sometimes I feel that I'm not doing enough. > > If my questions frustrate people I am truly sorry, but I want to get this right so that my child will have the healed, healthy gut she is supposed to. I'm counting on many things to come around once this happens - she might become potty trained!!! Yes, this makes me very excited, so please have a bit of patience and remember you were there once..... > > I will say no more on this subject, because it has taken up too much of my time, and time is a precious commodity in my house. Thanks for listening. > > Karyn > > > Hi , > > I agree with much of what you have said, and sure, we all have days > when we are impatient reading the same stuff over and over. > Personally, I just take a deep breath and log off. > > Which brings me to another point. You said, > > " I am sure that it gets tiring to feel like the same questions are > asked over and over but, if you feel you are unable to answer a new > person's question with patience, please allow someone else to do so. " > > We really need the people who AREN'T tired of answering these same > questions over and over to STEP UP and answer them too. > > I notice Jody and Sheila and Carol and Patti are working their > fingers off trying to answer posts. I know I've slacked off lately, > but usually because the conversation is about phenols or something > about which I have no knowledge. And yeah, sometimes it's because > I'm impatient ... > > Also as this list gets bigger and bigger, I think you will see more > often answers like: " see the Pecanbread website under the heading > XYZ. " > > Because otherwise, the people who DO answer the posts are just going > to get worn out and quit, and then where will the list be? > > Sue (From Pickering) > Mom to , 4, formerly? ASD, SCD 10 months > > > > > For information on the Specific Carbohydrate Diet, please read the following websites: > http://www.breakingtheviciouscycle.info > and > http://www.pecanbread.com > > > > Quote Link to comment Share on other sites More sharing options...
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