Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 and all, This touches on a great point that has been really bugging me lately. The ones who want to criticize and judge us for bio-medical treatments for our children most likely have done NO research. I have encountered pediatricians and doctors who will tell me how crazy I am and how mercury/vaccines do not cause autism, but when presented information (EO Harm, Kennedy's article) they collect dust on their desks, the do nothing to educate themselves. The latest one that really made me mad was Dr. Carbone. During his Verbal Behavior conference he said he has had one family at his center try GFCF and it didn't work, and one parent who was a Navy diver who took his child for one session in a hyperbaric chamber and it didn't do anything. Then he said maybe if he had a child with autism he would " throw his money away on stuff like that " , he just wasn't sure. I plan to write him a letter and ask him if he wouldn't mind doing some research on the diet and HBOT before he talks about it again in front of hundreds of professionals and parents. Alot of the people in that audience probably took his word as gospel, as he is considered an expert on autism. I just took his attitude as one that proves that he is just someone out for the money. I feel like he knows that if everyone tried bio-medical he wouldn't have as many clients as he does. > > Hi , > > People like your brother only believe what they do because they do all their " research " via > hearsay. I know a number of special ed teachers who " in their professional opinion " think > what I'm doing with my daughter is " dangerous. " Yeah, so dangerous she's doing better > than ever!!!! Encourage him to do his own research and ask him to visit some of your > favorite websites. > > And I'll give you one more: > http://www.autismmedia.org/ > > The video interviews on FAIR Autism Media's site will give him some exposure to the folks > who are actually doing the biomedical research that is helping our kids. > > Encourage him to visit the vaccines & autism gallery... and the heavy metal toxicity & > autism gallery. > > Nanstiel > FAIR Autism Media > > > > > > > > From: " H. " <tylerhaley01@> > > > Reply-EOHarm > > > <EOHarm >, " autismbiomedGA " > > > <autismbiomedGA > > > > Subject: Bad day > > > Date: Wed, 22 Feb 2006 19:03:03 -0500 > > > > > > I hope you don't mind if I vent but I have had a bad day. I was > > talking to > > > my mother last night and some how they had gotten on the topic of > > chelation > > > this past weekend when my brother, who is studying special > > education at UGA, > > > was at their house. She said that he was concerned over us doing > > chelation > > > (not doing it yet, just starting the diet). I told her that we > > were going to > > > wait until we have him completely GFCF for a while. Some children > > have been > > > greatly helped by diet alone and we were going to try it before > > thinking > > > about chelation. She said that my sister-in-law (who has read > > Evidence of > > > Harm) said that she thought we should have Tyler on the diet and > > do the > > > chelation if needed. I think this all started when they were > > talking about > > > us going to the Great Plains clinic in April and how much it was > > going to > > > cost. > > > > > > So I e-mailed my sister-in-law this morning to thank her for > > sticking by me. > > > She then told me the rest of the story that I think she thought I > > already > > > knew. My brother said that he has talked to parents and > > professionals that > > > have said that chelation doesn't help and it can be painful. He > > also doesn't > > > think that the diet will help (apparently more info from the > > parents and > > > " professionals " ). He said that autistic children go through enough > > with out > > > having to be on a strict diet. If Tyler wants a doughnut he should > > be able > > > to have a doughnut. (He can, as long as it is GFCF). The part that > > got me, > > > though, is when he said that autism can not be cured! He said the > > best thing > > > is to put them in a regular class room and let the teachers do > > their job. > > > > > > I agree with my sister-in-law when she said " He is right, if you > > do that to > > > a child they won't ever be cured! " > > > > > > It just made me so mad. I thought my family was behind me in all > > of this > > > then find out they are pretty much mocking me behind my back. I > > have doctors > > > that I deal with all the time telling me I am wrong. A little > > family support > > > would be nice. > > > > > > I sent them a nice e-mail with a link to autismmedia.org and told > > them to > > > check it out. I told them there was a lot there on chelation and > > the diet to > > > better educate them. I told them that I know what is out there in > > the media > > > and I don't trust the media or their " scientist " that they say > > back the > > > facts up. What I believe is the parents that I have talked to that > > have > > > watched their children fade in front of their eyes. These same > > parents have > > > watched their children re-emerge after chelation and diet > > intervention. I > > > said that I don't know that Tyler will be completely healed, but I > > won't > > > ever give up the fight. I told them that those who want to say > > that autism > > > is not curable are the ones that don't want you to know what > > caused it. I > > > said that I do believe that autism is curable and that if I didn't > > believe > > > that then it would mean that I had given up hope on my son and > > that is not > > > something that I am willing to do. > > > > > > Sorry, just had to vent. I obviously don't have anyone to talk to > > about this > > > now. Except my sister-in-law. Thank God for her. She luckily is > > one that > > > will tell you what she thinks whether you agree with her or not. > > > > > > > > > > > > Truth has three stages:First it is ridiculed,then it is violently > > > opposed,finally it is accepted as self-evident. > > > <http://www.evidenceofharm.com/> www.evidenceofharm.com > > > <http://www.generationrescue.org/> www.generationrescue.org > > > <http://www.safeminds.org/> www.safeminds.org > > > Has anyone else heard this? I found this old post from Liz Birt > > quoted on > > another board > > and wondered if it were true. > > > > Sara > > > > " I have been working with Boyd Haley since September 2000 who > > testified at the > > recent > > Congressional hearing. Your source is incorrect. I have Boyd's > > testing results > > and there is > > mercury in MMR. He did not find as much as what was in Hib, Hep B > > and DTaP. > > However, IT > > IS THERE. Whether this is problematic since it may be acting to kill > > the live > > virus which > > makes the vaccine more dangerous is open for debate. Also, my son > > got MMR and > > Hib at > > the same time so he did get mercury from the Hib and MMR combined. > > Nonetheless, > > the > > mercury in the MMR may be acting to depress the immune system and to > > boost the > > immune system to an unacceptable level in some children so they > > actually get the > > measles > > like my son. If you want any additional information let me know. > > > > It is in there believe me. We sent samples to Boyd Haley's > > laboratory and he > > detected it. It > > is not disclosed because it is used in the " manufacturing process " > > and is not > > used as a > > " preservative " . > > Liz Birt " > > > > > > > > > > > > > > > > > > Up Thread | Message Index | View Source | Unwrap Lines Message > > 172697 of 174419 < Previous Message | Next Message > > > Message # Search: Post Message > > > > ! SPONSOR RESULTS > > Child Autism helped by Vances DariFree - Many parents use Vances > > DariFree as part of the GFCF diet for their child autism. Get low > > cost and free shipping now. > > dari-free.com > > > > Autism and Children - Lelands new CD release includes 12 songs. The > > hit single missing pieces was written for autistic children > > worldwide and the parents who struggle to help them. 50% of song > > benefit autism. > > www.markleland.net > > > > Autism Awareness Depot Store - Offereing autism ribbon magents, > > autism ribbon pins and much more. In stock; same-day shipping. > > www.awarenessdepot.com > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Don't waste your time writing a letter to " DR. " Carbone. He has been " dissing " all the biomedical treatments for years. I sat and listened to him years ago drone on and on about what a waste of money, how dangerous, NY State Health Deparment doesn't back it, yadah, yadah, yadah...... So, I wrote him a HELL of a letter and hoped he would stick to what HE knows and not pass his ignorant, baseless views to people ever again. I am very sorry he did not follow my advice. My son is a tough nut. We have been doing diet, supps and various treatments with a Dan! for over five years. Not even close to recovery. If I could turn the clock back I would have invested all of my resources early on in Biomed. Instead we went full force with behavioral therapy. 40 hour a week home program and $$ consultant fees. We were discouraged from trying biomed by many behavioral " experts " and wasted precious valuable time due to bad advice. Time is not always on our side. I can look at my son today and know that he is a heck of a lot healthier, alert, affectionate, happier and not on any behavior altering meds. All thanks to Biomed. I feel he would be doing better today had we not drug our feet on biomed treatments. But, the improvements are undeniable. You will never convince people like Dr. Carbone that they are wrong. I know there are proponents of VB and biomed ( s of Mariposa for example). Ideally, children should have the best of both worlds (Biomed/ good behavioral therapy). Unfortunately, most people can't due both at all or long-term, as was the case with us. But I personally wish these " experts " would keep their opinions to themselves and stop giving people " medical " advice they are not qualified to give and stick to what they know. > > and all, > This touches on a great point that has been really bugging me > lately. The ones who want to criticize and judge us for bio- medical > treatments for our children most likely have done NO research. I > have encountered pediatricians and doctors who will tell me how crazy > I am and how mercury/vaccines do not cause autism, but when presented > information (EO Harm, Kennedy's article) they collect dust on > their desks, the do nothing to educate themselves. > The latest one that really made me mad was Dr. Carbone. > During his Verbal Behavior conference he said he has had one family > at his center try GFCF and it didn't work, and one parent who was a > Navy diver who took his child for one session in a hyperbaric chamber > and it didn't do anything. Then he said maybe if he had a child with > autism he would " throw his money away on stuff like that " , he just > wasn't sure. I plan to write him a letter and ask him if he wouldn't > mind doing some research on the diet and HBOT before he talks about > it again in front of hundreds of professionals and parents. Alot of > the people in that audience probably took his word as gospel, as he > is considered an expert on autism. I just took his attitude as one > that proves that he is just someone out for the money. I feel like > he knows that if everyone tried bio-medical he wouldn't have as many > clients as he does. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 I know that you are right, I'm wasting my breath on Carbone. It is just so wrong for him to get in front of all of those professionals who work with our children and tell them bio-med doesn't work when he doesn't even know what he's talking about (ONE session in a chamber!?). These people all go home believing every word he's said and become the ones that are scoffing behind our backs when we drop our kids off at school. At least we know that seeing is believing, and our children's teachers and therapists SEE the results of bio- med. This is the undeniable truth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Wow when was this conference, recently? I saw Dr. Carbone at the NAA Conference this past NOvember and he actually tried to sit in on a few of the presentations and told me he wished he'd been able to get there a day earlier to hear more. He was/seemed very interested in the biomed aspect. I've been to a few of his conferences over the years and even his clinic. everytime I've heard him speak of biomed he always stated he didn't know much about it. He knows I do a lot of biomed with my son and I've told him how it's helped. VB does work and do wonders for our kids, especially the severe ones. My take has always been that VB is a part of the puzzle. Your child may learn to speak/communicate, but he/she will still be autistic with vb. Only with biomed is there a chance to really heal our children. In a message dated 2/23/2006 10:53:13 A.M. Eastern Standard Time, EOHarm writes: and all,This touches on a great point that has been really bugging me lately. The ones who want to criticize and judge us for bio-medical treatments for our children most likely have done NO research. I have encountered pediatricians and doctors who will tell me how crazy I am and how mercury/vaccines do not cause autism, but when presented information (EO Harm, Kennedy's article) they collect dust on their desks, the do nothing to educate themselves.The latest one that really made me mad was Dr. Carbone. During his Verbal Behavior conference he said he has had one family at his center try GFCF and it didn't work, and one parent who was a Navy diver who took his child for one session in a hyperbaric chamber and it didn't do anything. Then he said maybe if he had a child with autism he would "throw his money away on stuff like that", he just wasn't sure. I plan to write him a letter and ask him if he wouldn't mind doing some research on the diet and HBOT before he talks about it again in front of hundreds of professionals and parents. Alot of the people in that audience probably took his word as gospel, as he is considered an expert on autism. I just took his attitude as one that proves that he is just someone out for the money. I feel like he knows that if everyone tried bio-medical he wouldn't have as many clients as he does. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 It amazes me that we see one or two children and can make a blanket statement regarding it. Like my child who started talking a few days after dairy was removed, because it worked for her doesn't mean it works for all kids with autism, just like those who don't benefit doesn't mean none will benefit. People like Carbone need to get it that autism is a spectrum disorder, that different things help different people. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 If I recall correctly most of the speaker's at that conference were biomed related. When in Rome..... Unless he has done a 180, he was pulling your leg that he is actually interested in biomed. He probably was just passifying you since you spent the money to go to his clinic. Or, you are in the upper income class that he prides himself in providing services to; therefore not wanting to aleinate you. I believe he used to say his clientele is primarily made up of families making 250k and up. His clinic fees are astromonical! He is great at what he does, but he is NOT AT ALL interested in biomed. > > > Wow when was this conference, recently? I saw Dr. Carbone at the NAA > Conference this past NOvember and he actually tried to sit in on a few of the > presentations and told me he wished he'd been able to get there a day earlier to > hear more. He was/seemed very interested in the biomed aspect. I've been to > a few of his conferences over the years and even his clinic. everytime I've > heard him speak of biomed he always stated he didn't know much about it. He > knows I do a lot of biomed with my son and I've told him how it's helped. > VB does work and do wonders for our kids, especially the severe ones. My > take has always been that VB is a part of the puzzle. Your child may learn to > speak/communicate, but he/she will still be autistic with vb. Only with > biomed is there a chance to really heal our children. > > > > In a message dated 2/23/2006 10:53:13 A.M. Eastern Standard Time, > EOHarm writes: > > and all, > This touches on a great point that has been really bugging me > lately. The ones who want to criticize and judge us for bio- medical > treatments for our children most likely have done NO research. I > have encountered pediatricians and doctors who will tell me how crazy > I am and how mercury/vaccines do not cause autism, but when presented > information (EO Harm, Kennedy's article) they collect dust on > their desks, the do nothing to educate themselves. > The latest one that really made me mad was Dr. Carbone. > During his Verbal Behavior conference he said he has had one family > at his center try GFCF and it didn't work, and one parent who was a > Navy diver who took his child for one session in a hyperbaric chamber > and it didn't do anything. Then he said maybe if he had a child with > autism he would " throw his money away on stuff like that " , he just > wasn't sure. I plan to write him a letter and ask him if he wouldn't > mind doing some research on the diet and HBOT before he talks about > it again in front of hundreds of professionals and parents. Alot of > the people in that audience probably took his word as gospel, as he > is considered an expert on autism. I just took his attitude as one > that proves that he is just someone out for the money. I feel like > he knows that if everyone tried bio-medical he wouldn't have as many > clients as he does. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 I am typically not much of a " post-er " but was motivated to this morning, primarily because I was taken aback to see Dr. Carbone's name referenced here on the EOH list. Of course, I had expected to find interesting subject matter exclusively relating to Mr. Kirby's laudable and vital work on the harm vaccines has caused to this generation, and relative topics. As mom to a child with ASD, if I am out there seeking more information at a conference, for example, and I leave believing that what Dr. Carbone had to say on the topic of biomedical interventions as " gospel, " then I should consider taking a step back to reorganize my approach in researching the various interventions available to help my son. Let's not ask the behavior questions of the biomedical experts, and vice versa. And let's not publicly disparage the professionals who do quality work. We all know that behavior is just one piece of the puzzle, if a significant one, and it's not our duty to convince the experts of that. Time and again I think about what could result if we collectively, as parents and loved ones of people living with ASD and related disorders, were not the most difficult group on the face of the earth to deal with. Don't get me wrong, we have every right to feel confused, misled, hostile and down-right lied to (on a regular basis). But let's ask ourselves from time to time: (1) Why do the most renown professionals continue to practice in their field when they rarely hear from us (their clients' spokespeople) unless we're angry and complaining (writing HELL letters), or we want something from them? Could it be because they are passionate about their work and area of expertise? Personally rewarded by the progress they recognize in their clients? Good at what they do and making a good living? (2) How can we as parents be consistently regarded by these experts (despite their particular field) as worthy partners in the ASD fight and pursuit; as credible sources of knowledge and information on our kids' behalf? What impact might that have on overall outcomes? I don't need to defend Dr. Carbone and that's not why I'm writing here. Having said that, our son is a client at the Carbone Clinic, and I can assure you that we don't earn $250k/year. Further, our son engages in an unusual behavior that could potentially have physical (medical) consequences. I know from personal experience that Dr. Carbone is generous and helpful in referring clients to other experts if he thinks that it could be useful. I'm not suggesting that the Carbone Clinic is in the charity business. I am suggesting that we are wrong to assume that because someone is good at what they do and making a good living, that they don't give back to the autism community in ways that we are unaware of. I hope we can learn to overcome our own conflicts of interest and take a closer look at our own behavior, and then prioritize. After all, our kids are (and should be!) the reason we work so hard, and exchange information and support with each other. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 I also wanted to make a comment about Dr. Carbone. I met him a few years ago at a wedding i was videotaping (the groom was one of his therapists). I introduced myself and he was very nice. Then I saw him speak at the NAA conference in November. He's a great speaker and has wonderful information about Verbal Behavior (like other people mentioned). I then asked him to be a keynote speaker at our conference here in New York in April- and he said " yes " without hesitation. Our conference is a mix of Behavior, Biomed, OT/Speech, Aspergers/Adult Issues, Legal Issues and Alternative Treatments. Kirby is our other keynote speaker (it's a two day event). We are a chapter of NAA. So, he doesn't believe everything I believe--who does? Most ABA people are so into ABA- it's hard to see other treatments. But, at least he, and some others, speak at our conferences- participate- open themselves up to this- even alittle bit. It goes both ways. I look at a person's intent. Dr. Carbone cares, he wants to help our families, he wants to help out kids. He's great at the VB stuff. If some parent won't try biomed because they heard Dr. Carbone make a side comment at the conference- then they weren't going to try it anyway. Let's just do our thing and keep getting the information out there- and it will work out. Like we've said before- If we are going to work to change every person's mind- we'll drive ourselves crazy. If you build it.... they will come have a little faith....... in one of those moods today- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 You have compelled me to chime in on this topic once again because you have referenced statements from my previous posts. This thread began by another parent who said she was not happy to hear Dr. Carbone bash (paraphrasing here) biomedical treatments and wanted to let him know of her displeasure by writing him a letter. I told her I had a similar encounter and I had written him a " HELL " of a letter- not a " HELL " letter regarding my displeasure in a similar situation while attending one of his conferences. I told this other parent that I had advised him a long time ago to stick with what he knows- Verbal Behavior. I was sorry to hear that at least according to this one parent he apparently still feels it is his place to bash biomedical treatments (although supposedly first stating he doesn't know much about them, before he makes a hypocrite out of himself by dispelling all the " myths " of those types of treatment). You are correct, parents should not be asking DR.'s with educational doctrates about medical treatments. That is exactly what happened at the conference I was attending. I thought why would he have an answer to a question like that? The question was " Do gluten and casein free diets really work for about 50% of kids with autism? " . I personally have never encountered a medical doctor who treats children with autism to put down ABA/VB, but have encountered multiple behavioral people who don't hesitate for one minute to bash medical treatments they only seem to have hearsay knowledge of, but hey that's my experience.(please not saying all do this but,I have had more than a few downright piss me off about it) The reason I wrote a letter to Dr. Carbone was because he spent over twenty minutes at my particular conference going on and on about why a parent should not do biomedical for a laundry list of reasons. Twenty minutes that I would have rather heard Dr. Carbone discuss VB then his opinions on something I'm certain he didn't (hasn't or won't) extensively research. I paid money to hear him talk about what he " knows " is good, not what he " thinks " is not good. Please reread my posts I have only praised Dr. Carbone for his skills where VB is concerned. So, no negative comments about his " expertise " , BUT he offended people like me who have found the biomedical to be extremely beneficial and was doing a huge dis-service to every parent in that audience who has a right and in my opinion an obligation to investigate such treaments for their ill child. I'm sure he persuaded many people on that day not to even bother to look into biomedical treatments because he is an " Autism " expert in their minds. Believe it or not, some people don't see the difference between what his " expertise " is regarding Behavioral interventions versus Medical interventions. Sorry, if you took offense to what was said. I hope you can see no one was critizing his knowledge regarding VB and his committment to his clients. He is a guy with a ton of charisma, an excellent speaker and is probably the BEST at what he does. I just wish he would really not say anything at all about biomed treatments (even when asked) and devote 100% of his conference time to what he knows and not what he doesn't. PS. He is making a ton of money from the misery and misfortune of autism, obviously he is not the only one. For some it has been very lucrative.... > > I am typically not much of a " post-er " but was motivated to this > morning, primarily because I was taken aback to see Dr. Carbone's > name referenced here on the EOH list. Of course, I had expected to > find interesting subject matter exclusively relating to Mr. Kirby's > laudable and vital work on the harm vaccines has caused to this > generation, and relative topics. > > As mom to a child with ASD, if I am out there seeking more > information at a conference, for example, and I leave believing that > what Dr. Carbone had to say on the topic of biomedical interventions > as " gospel, " then I should consider taking a step back to reorganize > my approach in researching the various interventions available to > help my son. Let's not ask the behavior questions of the biomedical > experts, and vice versa. And let's not publicly disparage the > professionals who do quality work. We all know that behavior is just > one piece of the puzzle, if a significant one, and it's not our duty > to convince the experts of that. > > Time and again I think about what could result if we collectively, as > parents and loved ones of people living with ASD and related > disorders, were not the most difficult group on the face of the earth > to deal with. Don't get me wrong, we have every right to feel > confused, misled, hostile and down-right lied to (on a regular > basis). But let's ask ourselves from time to time: (1) Why do the > most renown professionals continue to practice in their field when > they rarely hear from us (their clients' spokespeople) unless we're > angry and complaining (writing HELL letters), or we want something > from them? Could it be because they are passionate about their work > and area of expertise? Personally rewarded by the progress they > recognize in their clients? Good at what they do and making a good > living? (2) How can we as parents be consistently regarded by these > experts (despite their particular field) as worthy partners in the > ASD fight and pursuit; as credible sources of knowledge and > information on our kids' behalf? What impact might that have on > overall outcomes? > > I don't need to defend Dr. Carbone and that's not why I'm writing > here. Having said that, our son is a client at the Carbone Clinic, > and I can assure you that we don't earn $250k/year. Further, our son > engages in an unusual behavior that could potentially have physical > (medical) consequences. I know from personal experience that Dr. > Carbone is generous and helpful in referring clients to other experts > if he thinks that it could be useful. I'm not suggesting that the > Carbone Clinic is in the charity business. I am suggesting that we > are wrong to assume that because someone is good at what they do and > making a good living, that they don't give back to the autism > community in ways that we are unaware of. > > I hope we can learn to overcome our own conflicts of interest and > take a closer look at our own behavior, and then prioritize. After > all, our kids are (and should be!) the reason we work so hard, and > exchange information and support with each other. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 I totally agree with you that as parents we are responsible to research various interventions and find the true experts in each field to do so. BUT, that was not my point about Dr. Carbone. I believe most parents in the audience knew that Dr. Carbone was not " the gospel " when it comes to the GFCF diet and hyperbaric interventions he was speaking of. My point was that the other people in the audience - teachers, therapists, administrators - these are the people that would take his word as gospel. And in turn, that prevents our children from having a school environment that understands and supports the bio-medical interventions they are going through. FAR from that, I believe his comments lead them to believe what we are doing is a waste of time and money. Because that is precisely what he said. > > I am typically not much of a " post-er " but was motivated to this > morning, primarily because I was taken aback to see Dr. Carbone's > name referenced here on the EOH list. Of course, I had expected to > find interesting subject matter exclusively relating to Mr. Kirby's > laudable and vital work on the harm vaccines has caused to this > generation, and relative topics. > > As mom to a child with ASD, if I am out there seeking more > information at a conference, for example, and I leave believing that > what Dr. Carbone had to say on the topic of biomedical interventions > as " gospel, " then I should consider taking a step back to reorganize > my approach in researching the various interventions available to > help my son. Let's not ask the behavior questions of the biomedical > experts, and vice versa. And let's not publicly disparage the > professionals who do quality work. We all know that behavior is just > one piece of the puzzle, if a significant one, and it's not our duty > to convince the experts of that. > > Time and again I think about what could result if we collectively, as > parents and loved ones of people living with ASD and related > disorders, were not the most difficult group on the face of the earth > to deal with. Don't get me wrong, we have every right to feel > confused, misled, hostile and down-right lied to (on a regular > basis). But let's ask ourselves from time to time: (1) Why do the > most renown professionals continue to practice in their field when > they rarely hear from us (their clients' spokespeople) unless we're > angry and complaining (writing HELL letters), or we want something > from them? Could it be because they are passionate about their work > and area of expertise? Personally rewarded by the progress they > recognize in their clients? Good at what they do and making a good > living? (2) How can we as parents be consistently regarded by these > experts (despite their particular field) as worthy partners in the > ASD fight and pursuit; as credible sources of knowledge and > information on our kids' behalf? What impact might that have on > overall outcomes? > > I don't need to defend Dr. Carbone and that's not why I'm writing > here. Having said that, our son is a client at the Carbone Clinic, > and I can assure you that we don't earn $250k/year. Further, our son > engages in an unusual behavior that could potentially have physical > (medical) consequences. I know from personal experience that Dr. > Carbone is generous and helpful in referring clients to other experts > if he thinks that it could be useful. I'm not suggesting that the > Carbone Clinic is in the charity business. I am suggesting that we > are wrong to assume that because someone is good at what they do and > making a good living, that they don't give back to the autism > community in ways that we are unaware of. > > I hope we can learn to overcome our own conflicts of interest and > take a closer look at our own behavior, and then prioritize. After > all, our kids are (and should be!) the reason we work so hard, and > exchange information and support with each other. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Chistine said: " If some parent won't try biomed because they heard Dr. Carbone make a side comment at the conference- then they weren't going to try it anyway. Let's just do our thing and keep getting the information out there- and it will work out. Like we've said before- If we are going to work to change every person's mind- we'll drive ourselves crazy. " I'm sorry I have to disagree what you said. Most parents who attend conferences such as those of Dr. Carbone's are " desperately " searching for answers, direction and guidance. He shows some pretty powerful video and certainly has the knowledge and presentation to back up what he shows. I don't think there could have possibly ever been a parent, who has left one of his conferences without a feeling of great power. The power to make big changes in their child's life. The information he imparts along with his flawless presentation style is quite something to experience. So, if he can make you feel so strongly about the VB stuff and you gain respect for the guy over the 3 days you sit there and listen to him for hours on end. Yes, I think his opinion weighs a great deal for many. Maybe a lot more than you are giving it credit for. I personally needed to be gently persuaded by a dear friend for well over a year and a half before I decided to attempt the diet and get an appointmnet with a Dan! Why so long? Because I had been assured by a lot of " autism experts " - it was a waste of time, it was dangerous, it was unproven, it wouldn't make a difference, on and on and on.... Maybe you were smarter than me and jumped right in and knew exactly what to do. I didn't. I was confused. Who was I to believe? When my son was younger the internet wasn't what it is today. Today, there is so much information, knowledge and sharing that goes on here on this very list and many others like it. Five years ago things weren't so evident and available as they are today. That's why so many younger children are " recovering " with good biomedical and good behavioral treatment. Together. Lucky are those people who have done only one or neither and their children are doing well. So, when someone with a well respected reputation publicly speaks (not just a side comment) their opinion on well, really anything related to autism, people listen. People react, or fail to react, whatever the case may be. But, he certainly does weld influence. People do and will make treatment decisions based on his statements.Right or wrong it's going to happen. He probably comes in contact with thousands of parents and professionals each and every year. I don't understand why some feel it is ok for someone of his position in the autism community can say what he wants and discredit what many of us see as beneficial, and we should just look the other way and not take offense? Many people will take those baseless, hearsay statements to heart and fail to do anything and their children will be the ones to suffer for it. Maybe you can convince him at your conference the value of biomedical treatments. Hopefully, he'll care enough (find the time) to sit in on some of those presentations. All the while listening with an open mind about the possible value of those interventions. At the very least, realizing that he doesn't fully understand the issues and the complexities. And, maybe just maybe he will quit discussing them as his conferences. Good luck. > > I also wanted to make a comment about Dr. Carbone. > > I met him a few years ago at a wedding i was videotaping (the groom was one > of his therapists). I introduced myself and he was very nice. > > Then I saw him speak at the NAA conference in November. He's a great > speaker and has wonderful information about Verbal Behavior (like other > people mentioned). > > I then asked him to be a keynote speaker at our conference here in New York > in April- and he said " yes " without hesitation. Our conference is a mix of > Behavior, Biomed, OT/Speech, Aspergers/Adult Issues, Legal Issues and > Alternative Treatments. Kirby is our other keynote speaker (it's a > two day event). We are a chapter of NAA. > > So, he doesn't believe everything I believe--who does? Most ABA people are > so into ABA- it's hard to see other treatments. But, at least he, and some > others, speak at our conferences- participate- open themselves up to this- > even alittle bit. It goes both ways. I look at a person's intent. Dr. > Carbone cares, he wants to help our families, he wants to help out kids. > He's great at the VB stuff. If some parent won't try biomed because they > heard Dr. Carbone make a side comment at the conference- then they weren't > going to try it anyway. Let's just do our thing and keep getting the > information out there- and it will work out. Like we've said before- If we > are going to work to change every person's mind- we'll drive ourselves > crazy. > > If you build it.... they will come have a little faith....... > > in one of those moods today- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 I'm sorry to hear that Dr Carbone is talking that way now. I recently had a brand new autism Mom (her son is in the process of being diagnosed) go to his Atlanta conference on my recommendation. This would have been her very first experience hearing a doctor of " anything " speak about autism. Unfortunately, there aren't a large number of families doing biomed to provide another point of reference and this Mom's son really needs to be given a trial run of diet. He's an extemely picky eater and has lots of oral sensory issues. Vicki > > > > Hi , > > > > People like your brother only believe what they do because they do > all their " research " via > > hearsay. I know a number of special ed teachers who " in their > professional opinion " think > > what I'm doing with my daughter is " dangerous. " Yeah, so dangerous > she's doing better > > than ever!!!! Encourage him to do his own research and ask him to > visit some of your > > favorite websites. > > > > And I'll give you one more: > > http://www.autismmedia.org/ > > > > The video interviews on FAIR Autism Media's site will give him some > exposure to the folks > > who are actually doing the biomedical research that is helping our > kids. > > > > Encourage him to visit the vaccines & autism gallery... and the > heavy metal toxicity & > > autism gallery. > > > > Nanstiel > > FAIR Autism Media > > > > > > > > > > > > From: " H. " <tylerhaley01@> > > > > Reply-EOHarm > > > > <EOHarm >, " autismbiomedGA " > > > > <autismbiomedGA > > > > > Subject: Bad day > > > > Date: Wed, 22 Feb 2006 19:03:03 -0500 > > > > > > > > I hope you don't mind if I vent but I have had a bad day. I was > > > talking to > > > > my mother last night and some how they had gotten on the topic > of > > > chelation > > > > this past weekend when my brother, who is studying special > > > education at UGA, > > > > was at their house. She said that he was concerned over us > doing > > > chelation > > > > (not doing it yet, just starting the diet). I told her that we > > > were going to > > > > wait until we have him completely GFCF for a while. Some > children > > > have been > > > > greatly helped by diet alone and we were going to try it before > > > thinking > > > > about chelation. She said that my sister-in-law (who has read > > > Evidence of > > > > Harm) said that she thought we should have Tyler on the diet > and > > > do the > > > > chelation if needed. I think this all started when they were > > > talking about > > > > us going to the Great Plains clinic in April and how much it > was > > > going to > > > > cost. > > > > > > > > So I e-mailed my sister-in-law this morning to thank her for > > > sticking by me. > > > > She then told me the rest of the story that I think she thought > I > > > already > > > > knew. My brother said that he has talked to parents and > > > professionals that > > > > have said that chelation doesn't help and it can be painful. He > > > also doesn't > > > > think that the diet will help (apparently more info from the > > > parents and > > > > " professionals " ). He said that autistic children go through > enough > > > with out > > > > having to be on a strict diet. If Tyler wants a doughnut he > should > > > be able > > > > to have a doughnut. (He can, as long as it is GFCF). The part > that > > > got me, > > > > though, is when he said that autism can not be cured! He said > the > > > best thing > > > > is to put them in a regular class room and let the teachers do > > > their job. > > > > > > > > I agree with my sister-in-law when she said " He is right, if > you > > > do that to > > > > a child they won't ever be cured! " > > > > > > > > It just made me so mad. I thought my family was behind me in > all > > > of this > > > > then find out they are pretty much mocking me behind my back. I > > > have doctors > > > > that I deal with all the time telling me I am wrong. A little > > > family support > > > > would be nice. > > > > > > > > I sent them a nice e-mail with a link to autismmedia.org and > told > > > them to > > > > check it out. I told them there was a lot there on chelation > and > > > the diet to > > > > better educate them. I told them that I know what is out there > in > > > the media > > > > and I don't trust the media or their " scientist " that they say > > > back the > > > > facts up. What I believe is the parents that I have talked to > that > > > have > > > > watched their children fade in front of their eyes. These same > > > parents have > > > > watched their children re-emerge after chelation and diet > > > intervention. I > > > > said that I don't know that Tyler will be completely healed, > but I > > > won't > > > > ever give up the fight. I told them that those who want to say > > > that autism > > > > is not curable are the ones that don't want you to know what > > > caused it. I > > > > said that I do believe that autism is curable and that if I > didn't > > > believe > > > > that then it would mean that I had given up hope on my son and > > > that is not > > > > something that I am willing to do. > > > > > > > > Sorry, just had to vent. I obviously don't have anyone to talk > to > > > about this > > > > now. Except my sister-in-law. Thank God for her. She luckily is > > > one that > > > > will tell you what she thinks whether you agree with her or not. > > > > > > > > > > > > > > > > Truth has three stages:First it is ridiculed,then it is > violently > > > > opposed,finally it is accepted Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Years ago Dr. Carbone spent almost two hours on the telephone with me about my daughter who has autism and is 11 years old. This is when I found out my child had autism and was called hopeless. He didn't get a penney. But he gave me some encouraging advice and I took it and am glad to this day that I did. I put my daughter through the ABA program To this day she is the best behaved autistic child you will ever meet. I still do the ABA (I went to school with my child to learn the procedure. She is now 11 years old. She has been on the gluten and casein free diet for three years, we are doing dietary supplements, B12 folinc acid, gluthioione, and chelation. She has improved 100 Percent. I am very glad that I listened to Dr. Carbone instead of some doctor who told me autism was hopeless and uncurable and intreatable. She is recovering thanks be to God. Praise God for encouraging and wonderful people. Quote Link to comment Share on other sites More sharing options...
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