Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 The part about the teleconferencing thing was hysterical. My first thought, that had me nearly peeing my pants, was the realization that they wanted kids to watch ABA on tv. Didn’t they just spend like a bazillion dollars and decide that watching tv CAUSES autism? Idiots. I did see this as dangerous because I can see schools and states saying “you people don’t need 1:1 in brick and mortar, you can just watch these dvds! Go away now!” I bet you anything that AS will be funding the next teletherapy project. Gag. Holly- I laughed so hard at that I almost threw up Thanks for going and reporting back. I know it couldn’t be easy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 The Department of Education already gave Judith Favell and Celeste Foundation 7 figures $$$$ to research telehealth for autism so it could be validated. It is a poor excuse for real therapy, but you are exactly right - it is a way to cut costs at the expense of our children. Maybe in a rural area with zero access to services it is a valid substitute, but I spoke to Iowans (the one who testified about his family's experience with telehealth was in Sioux City - Iowa was part of the study) and all said that they can access services (not biomedical but ABA and related services) and they would reject the interactive video. I briefly address this issue in my submitted testimony that you can find in the files section of EOH. On Apr 17, 2007, at 9:28 PM, christine wrote: > > The part about the teleconferencing thing was hysterical.  My first > thought, that had me nearly peeing my pants, was the realization that > they wanted kids to watch ABA on tv.  Didn’t they just spend like a > bazillion dollars and decide that watching tv CAUSES autism?  Idiots. >  I did see this as dangerous because I can see schools and states > saying “you people don’t need 1:1 in brick and mortar, you can just > watch these dvds!  Go away now!† I bet you anything that AS will be > funding the next teletherapy project.  Gag. >  Holly- I laughed so hard at that I almost threw up Thanks for going and reporting back.  I know it couldn’t be easy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 NO, NO, NO, NO, NO!!!!!!!!!!!!!!!!!!! PLEASE...do not start with the " valid substitute in rural areas " . If that is where you start, that is what you will get. For God's sakes people, we live in the United States of America, not Pakistan. If we can get $400,000 chemotherapeutic agents (with 3% response rates) to anyone, anywhere in this country, we can get ABA anywhere. I am SICK TO DEATH of people saying we can't provide ABA nationwide--we CAN. It is NOT too expensive; it is too expensive not to do it. Look at the $12M/$17M adult costs to see what you get if you DON'T get this illness treated. We spend 2 trillion dollars a year in this country on healthcare--2 trillion. OK, got that? Just to use one example, we spend $10 billion per year on only one drug- EPO, that is not even used in the UK for the most common indications it's used for here. We spend zillions of dollars on end of life care for terminally ill people. Go price out a stay in an intensive care unit for an elderly person with a hip fracture--you can fritter through half a million bucks for a single incident in no time at all. I am not saying we shouldn't do this; I AM saying that THEY ARE NOT MORE IMPORTANT THAN MY KID. I am so sick of hearing we cannot afford ABA. ABA is better studied and more efficacious than most drugs. We CAN afford it, and should never accept this video-crapola alternative. OK, need to calm down now... Jenna > > > > > The part about the teleconferencing thing was hysterical.  My first > > thought, that had me nearly peeing my pants, was the realization that > > they wanted kids to watch ABA on tv.  Didn’t they just spend like a > > bazillion dollars and decide that watching tv CAUSES autism?  Idiots. > >  I did see this as dangerous because I can see schools and states > > saying “you people don’t need 1:1 in brick and mortar, you can just > > watch these dvds!  Go away now!† I bet you anything that AS will be > > funding the next teletherapy project.  Gag. > >  > > > Holly- I laughed so hard at that I almost threw up > > Thanks for going and reporting back.  I know it couldn’t be easy. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Jenna, ABA can not cure mercury poisoning and costs around $50K per year. Chelation CAN cure mercury poisoning and costs a few bucks a month. If you don't think your kid has mercury poisoning, you have a point. All the ABA in the world won't help my kid and I think it is a huge waste of money. But, giving it to everybody would make our government look good while keeping the drug companies happy who also know that ABA can not cure mercury poisoning. > > > > > > > > The part about the teleconferencing thing was hysterical.  My > first > > > thought, that had me nearly peeing my pants, was the realization > that > > > they wanted kids to watch ABA on tv.  Didn’t they just spend > like a > > > bazillion dollars and decide that watching tv CAUSES autism? >  Idiots. > > >  I did see this as dangerous because I can see schools and > states > > > saying “you people don’t need 1:1 in brick and mortar, you > can just > > > watch these dvds!  Go away now!† I bet you anything that AS > will be > > > funding the next teletherapy project.  Gag. > > >  > > > > > > Holly- I laughed so hard at that I almost threw up > > > > Thanks for going and reporting back.  I know it couldn’t be > easy. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 The part about the teleconferencing thing was hysterical The part about teleconferencing is sad. Now that Imus is gone, MSNBC will crash and burn. ABA works for somebody? Huh. Maybe they could turn MSNBC into an AS tele-teaching project like PBS Good Night Show? MSNBC. That could stand for Mass Sadistic Nefarious Brain-washing Company? They could start with Matt Roker, teaching him how to count his millions, keep quiet, and leave other people alone. The teacher could tell him that things in life hurt, and the great secret is not minding that things hurt. > > I am just back from a long day in DC. It did not go so well for us. > Something you all might not have been able to see was all the hugging and > kissing and handshaking going on before and after the hearing. A lot of > chummy stuff going on. Very unsettling. > > > > There were also a lot of lies put forth by Gerberding and Insel. What > weasles they were. > > > > Bob did a decent job, right up until he talked about chelation, which > is when he basically said that we were all risking our kids with it because > the payoff MIGHT be worth the risk. What he said was not encouraging. > > > > Harkin did a good job. He had a lot of background info but he was given > blatantly false answers today by NIH and CDC. We need to correct what was > not true with him asap and ask him to keep holding more hearings with more > parental input. > > > > The part about the teleconferencing thing was hysterical. My first thought, > that had me nearly peeing my pants, was the realization that they wanted > kids to watch ABA on tv. Didn't they just spend like a bazillion dollars > and decide that watching tv CAUSES autism? Idiots. I did see this as > dangerous because I can see schools and states saying " you people don't need > 1:1 in brick and mortar, you can just watch these dvds! Go away now! " I > bet you anything that AS will be funding the next teletherapy project. Gag. > > > > Max was the only person with autism there today, despite the room being > standing room only. He did a kick ass job (you will know that if you > listened to the feed and never heard him yelling " Amtrak! " ) lol > > > > The worst part was that this exact word for word hearing could have been > help 7 years ago. We knew all the same stuff back then. We talked about > all the same stuff. They lied the same lies. Everything. That means in 7 > years we have not moved. Not progressed. That sucks ass. We need to do > better. > > > > All in all, kinda worthless as hearings go but maybe ya'll will get a taste > for it and start calling and get more hearings with MORE input from our > side. > > > > Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 The govenment is serious about telehealth. They invested several million dollars in getting it validated. One of the test areas is Iowa. They flew parents in to Florida then provided therapy and counseling through video by installing a video camera in the family's home. Wonder how the Patriot Act fits into this type of scenario? On Apr 17, 2007, at 11:52 PM, kerbob1 wrote: The part about the teleconferencing thing was hysterical The part about teleconferencing is sad. Now that Imus is gone, MSNBC will crash and burn. ABA works for somebody? Huh. Maybe they could turn MSNBC into an AS tele-teaching project like PBS Good Night Show? MSNBC. That could stand for Mass Sadistic Nefarious Brain-washing Company? They could start with Matt Roker, teaching him how to count his millions, keep quiet, and leave other people alone. The teacher could tell him that things in life hurt, and the great secret is not minding that things hurt. > > I am just back from a long day in DC. It did not go so well for us. > Something you all might not have been able to see was all the hugging and > kissing and handshaking going on before and after the hearing. A lot of > chummy stuff going on. Very unsettling. > > > > There were also a lot of lies put forth by Gerberding and Insel. What > weasles they were. > > > > Bob did a decent job, right up until he talked about chelation, which > is when he basically said that we were all risking our kids with it because > the payoff MIGHT be worth the risk. What he said was not encouraging. > > > > Harkin did a good job. He had a lot of background info but he was given > blatantly false answers today by NIH and CDC. We need to correct what was > not true with him asap and ask him to keep holding more hearings with more > parental input. > > > > The part about the teleconferencing thing was hysterical. My first thought, > that had me nearly peeing my pants, was the realization that they wanted > kids to watch ABA on tv. Didn't they just spend like a bazillion dollars > and decide that watching tv CAUSES autism? Idiots. I did see this as > dangerous because I can see schools and states saying " you people don't need > 1:1 in brick and mortar, you can just watch these dvds! Go away now! " I > bet you anything that AS will be funding the next teletherapy project. Gag. > > > > Max was the only person with autism there today, despite the room being > standing room only. He did a kick ass job (you will know that if you > listened to the feed and never heard him yelling " Amtrak! " ) lol > > > > The worst part was that this exact word for word hearing could have been > help 7 years ago. We knew all the same stuff back then. We talked about > all the same stuff. They lied the same lies. Everything. That means in 7 > years we have not moved. Not progressed. That sucks ass. We need to do > better. > > > > All in all, kinda worthless as hearings go but maybe ya'll will get a taste > for it and start calling and get more hearings with MORE input from our > side. > > > > Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 - Have you been to a DAN conference? To a DAN doctor? I know not of a single DAN that does not advocate using BOTH biomed and intensive behavioral interventions. Look at the DANs with ASD kids--they ALL have intensive behavioral programs in place for their kids in addition to all the biomed interventions they use. Dr. Bradstreet STARTED AN ABA SCHOOL for goodness sake. MANY DRUGS COST $50,000 a year--DO YOUR RESEARCH!!!!!!!!!!!!!!!! Risperdal is something like $12,000/year and people stay on it indefinitely (unlike ABA) and often in combination with other expensive drugs. We can afford ABA. ABA was not a waste of money for us. It was a miracle. My son was a complete mess. We were told to put him in an institution. Biomed was a big part of the answer as well, but he would NEVER EVER be in a mainstream setting without ABA. Please go and read " Let Me Hear Your Voice " by Maurice about 2 children who recovered totally with ABA therapy and no biomed. I personally know 6 families with recovered kids in my area who used ABA only. Why is it in this community that people only advocate only for " whatever worked for their kid " and then diss everything else? Advocate away for biomed, particularly chelation. But don't trash ABA as part of that process. Jenna > > > > > > > > > > > The part about the teleconferencing thing was hysterical.  My > > first > > > > thought, that had me nearly peeing my pants, was the > realization > > that > > > > they wanted kids to watch ABA on tv.  Didn’t they just spend > > like a > > > > bazillion dollars and decide that watching tv CAUSES autism? > >  Idiots. > > > >  I did see this as dangerous because I can see schools and > > states > > > > saying “you people don’t need 1:1 in brick and mortar, you > > can just > > > > watch these dvds!  Go away now!† I bet you anything that > AS > > will be > > > > funding the next teletherapy project.  Gag. > > > >  > > > > > > > > > Holly- I laughed so hard at that I almost threw up > > > > > > Thanks for going and reporting back.  I know it couldn’t be > > easy. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 With your post below I do not find your assertion to be true at all. You responded to one comment. Why the need to generalize to " this community " . On Apr 18, 2007, at 12:13 AM, wewillwin07 wrote: Why is it in this community that people only advocate only for " whatever worked for their kid " and then diss everything else? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Oh, come on. The autism community is the most splintered group of people on the planet. I have seen many instances on this board of people dissing non-biomed interventions. I have seen many instances of ABA advocates dissing biomed. Then there are all the sub-groups bickering ruthlessly and endlessly. I have never seen Stanley Greenspan give a speech without throwing out barbs at ABA. Same with Steve Gutstein. Then go talk to one of the well known ABA purist behaviorists like Greene and they will just ream on DIR/Floortime, RDI and even VB-ABA! We have behaviorists around here that are even against speech and OT (and the speech and OT professionals tend to be in more of the Greenspan than ABA camp although I see this changing somewhat). On many biomed boards, people bash each other for using the wrong chelation protocol, the wrong form of HBOT, DAN instead Yasko, Rx meds versus supplements, etc. The ck2 board was even shut down awhile back because the moderator got so sick of this. We need to stand united in advocating for all forms of treatment that have been found to be useful, not just to each of us personally, but to the community in general. That is all I am saying. Jenna > > Why is it in this community that people only advocate only > for " whatever worked for their kid " and then diss everything else? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 what works for the goose may not work for the gander. Every kid is different. Some kids improve on ABA-some don't. Some people love ABA-some don't. The spectrum is broad-very broad---wewillwin07 <mamabear@...> wrote: -Have you been to a DAN conference? To a DAN doctor? I know not of a single DAN that does not advocate using BOTH biomed and intensive behavioral interventions. Look at the DANs with ASD kids--they ALL have intensive behavioral programs in place for their kids in addition to all the biomed interventions they use. Dr. Bradstreet STARTED AN ABA SCHOOL for goodness sake.MANY DRUGS COST $50,000 a year--DO YOUR RESEARCH!!!!!!!!!!!!!!!! Risperdal is something like $12,000/year and people stay on it indefinitely (unlike ABA) and often in combination with other expensive drugs. We can afford ABA.ABA was not a waste of money for us. It was a miracle. My son was a complete mess. We were told to put him in an institution. Biomed was a big part of the answer as well, but he would NEVER EVER be in a mainstream setting without ABA. Please go and read "Let Me Hear Your Voice" by Maurice about 2 children who recovered totally with ABA therapy and no biomed. I personally know 6 families with recovered kids in my area who used ABA only.Why is it in this community that people only advocate only for "whatever worked for their kid" and then diss everything else? Advocate away for biomed, particularly chelation. But don't trash ABA as part of that process.Jenna> > > > > > >> > > > The part about the teleconferencing thing was hysterical.  My > > first > > > > thought, that had me nearly peeing my pants, was the > realization > > that > > > > they wanted kids to watch ABA on tv.  Didn’t they just spend > > like a > > > > bazillion dollars and decide that watching tv CAUSES autism? > >  Idiots. > > > >  I did see this as dangerous because I can see schools and > > states > > > > saying “you people don’t need 1:1 in brick and mortar, you > > can just > > > > watch these dvds!  Go away now!† I bet you anything that > AS > > will be > > > > funding the next teletherapy project.  Gag.> > > >  > > > > > > > > > Holly- I laughed so hard at that I almost threw up > > > > > > Thanks for going and reporting back.  I know it couldn’t be > > easy.> > > > > > > > >> >> Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Jenna, I've been to a DAN conference and a few DAN doc's. I found the DAN doc's knew a lot less about chelation than Andy Cutler. He's the only one I trust. I personally think ABA is torture. I've read several accounts that say the results are temporary. The reason I agree with this is that I think Deth gave us the best explanation of what autism is when he told us that kids who didn't have any methyl B-12 were incapable of paying attention to anything. No matter what you do to force that kid to pay attention, the mercury is still in them preventing them from making their own MB-12. Whatever attention you force out of them has to be an incredible strain on the kids. Let's remember that ABA is something that's left over from a time before we knew that mercury had caused the autism. I think the prudent thing to do is toss it and focus on the cause. If kids improve with chelation, they won't need the ABA. If they improve with ABA by itself, the mercury is still sitting there killing more brain cells. That said, I'd be happy to see some tax dollars going towards anything that helps our kids, ABA included. However, jumping down the throats of government people to provide ABA for everyone is counterproductive if pushing that issue allows our illustrious politicians to continue to whitewash the root of the problem. Addressing the fact that most autistic children still have mercury in their brains is the only important thing as far as I'm concerned. Our government doesn't give a damn about our kids. In the long run, they'll be thrilled to give us ABA if that can shut us up about thimerosal so they can protect their campaign contributors bank accounts. So, the question is, do you want to settle for having everyone get a half-assed cure like ABA or do you want to see every kid get the mercury out of his head? > > > > > > > > > > > > > > The part about the teleconferencing thing was hysterical. >  My > > > first > > > > > thought, that had me nearly peeing my pants, was the > > realization > > > that > > > > > they wanted kids to watch ABA on tv.  Didn’t they just > spend > > > like a > > > > > bazillion dollars and decide that watching tv CAUSES autism? > > >  Idiots. > > > > >  I did see this as dangerous because I can see schools and > > > states > > > > > saying “you people don’t need 1:1 in brick and mortar, > you > > > can just > > > > > watch these dvds!  Go away now!† I bet you anything that > > AS > > > will be > > > > > funding the next teletherapy project.  Gag. > > > > >  > > > > > > > > > > > > Holly- I laughed so hard at that I almost threw up > > > > > > > > Thanks for going and reporting back.  I know it couldn’t > be > > > easy. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 I live in one of those remote areas. ABA? Are you kidding? We'd never get an ABA provider here; we can't even get a respite provider! BUT I WOULD NEVER GO FOR AN INTERACTIVE TV therapy!! No way, no how. Don't anyone tell me that we need it for the remote areas; trash is trash, poor substitutes are NOT better than nothing! Sorry, this makes me ANGRY! > > > > > > > > The part about the teleconferencing thing was hysterical.  My > first > > > thought, that had me nearly peeing my pants, was the realization > that > > > they wanted kids to watch ABA on tv.  Didn’t they just spend > like a > > > bazillion dollars and decide that watching tv CAUSES autism? >  Idiots. > > >  I did see this as dangerous because I can see schools and > states > > > saying “you people don’t need 1:1 in brick and mortar, you > can just > > > watch these dvds!  Go away now!† I bet you anything that AS > will be > > > funding the next teletherapy project.  Gag. > > >  > > > > > > Holly- I laughed so hard at that I almost threw up > > > > Thanks for going and reporting back.  I know it couldn’t be > easy. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 > > Wonder how the Patriot Act fits into this type of scenario? > > This is one of the first things that came to mind when I read about Telehealth (sorry-can't remember the corporate name). There is no way in hell I would trust those people to moniter my child or my family by video camera. Aside from the premise (and I am probably just paranoid) that it is long distance therapy and support, who's to say there isn't a hidden agenda in all this. Remember teen screen? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 - Your argument is flawed. Here's a cancer analogy, a subject with which I am unfortunately all too familiar. Breast cancer used to be a veritable death sentence. It is now pretty treatable, sometimes even curable. But it is still a deadly disease, with a stubborn recurrence rate, and there is a long, long way to go before it is truly conquered. Now pretend the goverment wouldn't cover even the treatments that currently exist and are well accepted by the scientific community, limited as they are (like ABA--limited in that they don't work at all for some, create a partial response in others, and a robust response in some). What is the logical thing for people to advocate for here? TWO THINGS--fund the stuff that we know works to some extent AND fund therapies with even more promise. You wouldn't choose one over the other. What if choice #1 worked for some and choice #2 didn't? You'd be depriving that group of effective treatment! Why do you think giving me ABA would shut me up about mercury? Why can't we demand that both educational and biomed therapies be funded and researched? Please don't say " because there isn't enough money " . Not true. Also, you mention that you believe ABA results to be " temporary " . Again, not true--I have several friends with teenagers (ABA only-no biomed) that have been mainstreamed since grades 1 or 2 without any support whatsoever. Stars of the school play, straight As, football team, lots of friends, etc. Do you think they are going to suddenly regress again after being recovered for 8-10 years? I am sorry that you refuse to believe that children can recover without biomed. Finally, if you think ABA is " torture " , you haven't seen ABA done properly. This is not only a possibility, it is a probability, as there is a lot of poorly performed ABA out there. Jenna > > > > > > > > > > > > > > > > > The part about the teleconferencing thing was hysterical. > >  My > > > > first > > > > > > thought, that had me nearly peeing my pants, was the > > > realization > > > > that > > > > > > they wanted kids to watch ABA on tv.  Didn’t they just > > spend > > > > like a > > > > > > bazillion dollars and decide that watching tv CAUSES > autism? > > > >  Idiots. > > > > > >  I did see this as dangerous because I can see schools and > > > > states > > > > > > saying “you people don’t need 1:1 in brick and mortar, > > you > > > > can just > > > > > > watch these dvds!  Go away now!† I bet you anything > that > > > AS > > > > will be > > > > > > funding the next teletherapy project.  Gag. > > > > > >  > > > > > > > > > > > > > > > Holly- I laughed so hard at that I almost threw up > > > > > > > > > > Thanks for going and reporting back.  I know it couldn’t > > be > > > > easy. > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Great. Send a letter to Sen. Harkin's committee expressing your view. Sen. Harkin conjectured it might be useful in rural areas that are prevalent in Iowa. On Apr 18, 2007, at 1:08 AM, shilohashfork wrote: I live in one of those remote areas. ABA? Are you kidding? We'd never get an ABA provider here; we can't even get a respite provider! BUT I WOULD NEVER GO FOR AN INTERACTIVE TV therapy!! No way, no how. Don't anyone tell me that we need it for the remote areas; trash is trash, poor substitutes are NOT better than nothing! Sorry, this makes me ANGRY! > > > > > > > > The part about the teleconferencing thing was hysterical.  My > first > > > thought, that had me nearly peeing my pants, was the realization > that > > > they wanted kids to watch ABA on tv.  Didn’t they just spend > like a > > > bazillion dollars and decide that watching tv CAUSES autism? >  Idiots. > > >  I did see this as dangerous because I can see schools and > states > > > saying “you people don’t need 1:1 in brick and mortar, you > can just > > > watch these dvds!  Go away now!† I bet you anything that AS > will be > > > funding the next teletherapy project.  Gag. > > >  > > > > > > Holly- I laughed so hard at that I almost threw up > > > > Thanks for going and reporting back.  I know it couldn’t be > easy. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 I think many parents would reject the idea of allowing a video camera into their living space. Intrusive and creepy. On Apr 18, 2007, at 1:08 AM, King wrote: > > Wonder how the Patriot Act fits into this type of scenario? > > This is one of the first things that came to mind when I read about Telehealth (sorry-can't remember the corporate name). There is no way in hell I would trust those people to moniter my child or my family by video camera. Aside from the premise (and I am probably just paranoid) that it is long distance therapy and support, who's to say there isn't a hidden agenda in all this. Remember teen screen? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Applied Behavior Analysis is not temporary. And it is not torture. Sometimes a little research might be better than starting a statement with I think or I've heard. As a trained researcher I use empirical research to support my ideas. My very tortured child, is now a very happy child has only had intensive ABA until this year. ABA has recovered my son. And it is not half-assed! Chelation is curing him of medical issues and getting that damned mercury out of his brain!. With ABA (proper ABA) my son is in a regular ed classroom at grade level and is very social and has friends. He has a very wonderful imagination and is very intelligent. This is because he has had an excellent ABA program supervised by a Board Certified Behavior Analyst who has an excellent reputation. ABA bashing is stupid and ignorant. There needs to be support for families who are utilizing ABA as well as those who use chelation and medical interventions. And for those of us who use both. ABA does not work for every child and no one said it did. But don't belittle something that works when you don't understand it. I also use Andy Cutler's protocol after a lot of research and found it to be the safest. My son is doing very well and I do recommend both interventions for our children. If I followed your advice my 11 year-old son would not be where he is now! Kathleen The world is not yet exhausted; let me see something tomorrow which I never saw before.- ************************************************************************* Re: back from the hearing Jenna, I've been to a DAN conference and a few DAN doc's. I found the DAN doc's knew a lot less about chelation than Andy Cutler. He's the only one I trust. I personally think ABA is torture. I've read several accounts that say the results are temporary. The reason I agree with this is that I think Deth gave us the best explanation of what autism is when he told us that kids who didn't have any methyl B-12 were incapable of paying attention to anything. No matter what you do to force that kid to pay attention, the mercury is still in them preventing them from making their own MB-12. Whatever attention you force out of them has to be an incredible strain on the kids. Let's remember that ABA is something that's left over from a time before we knew that mercury had caused the autism. I think the prudent thing to do is toss it and focus on the cause. If kids improve with chelation, they won't need the ABA. If they improve with ABA by itself, the mercury is still sitting there killing more brain cells. That said, I'd be happy to see some tax dollars going towards anything that helps our kids, ABA included. However, jumping down the throats of government people to provide ABA for everyone is counterproductive if pushing that issue allows our illustrious politicians to continue to whitewash the root of the problem. Addressing the fact that most autistic children still have mercury in their brains is the only important thing as far as I'm concerned. Our government doesn't give a damn about our kids. In the long run, they'll be thrilled to give us ABA if that can shut us up about thimerosal so they can protect their campaign contributors bank accounts. So, the question is, do you want to settle for having everyone get a half-assed cure like ABA or do you want to see every kid get the mercury out of his head? > > > > > > > > >> > > > > The part about the teleconferencing thing was hysterical. >  My > > > first > > > > > thought, that had me nearly peeing my pants, was the > > realization > > > that > > > > > they wanted kids to watch ABA on tv.  Didn’t they just > spend > > > like a > > > > > bazillion dollars and decide that watching tv CAUSES autism? > > >  Idiots. > > > > >  I did see this as dangerous because I can see schools and > > > states > > > > > saying “you people don’t need 1:1 in brick and mortar, > you > > > can just > > > > > watch these dvds!  Go away now!† I bet you anything that > > AS > > > will be > > > > > funding the next teletherapy project.  Gag.> > > > >  > > > > > > > > > > > > Holly- I laughed so hard at that I almost threw up > > > > > > > > Thanks for going and reporting back.  I know it couldn’t > be > > > easy.> > > > > > > > > > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 I also don't understand how one would achieve compliance. If this were used with my son in the beginning, he would have just walked away from the screen and gone into the corner to stim. We tried some computer programs that had " reinforcers on the screen " in the form of fun graphics, etc., and they were useless. Also, how do you incorporate sensory tactics like deep pressure, etc.? Sensory diets are part of many ABA programs nowadays. A bad idea all the way around. I will call Sen. Harkin. > > > > Wonder how the Patriot Act fits into this type of scenario? > > > > > This is one of the first things that came to mind when I read about > Telehealth (sorry-can't > remember the corporate name). There is no way in hell I would trust > those people to > moniter my child or my family by video camera. Aside from the premise > (and I am > probably just paranoid) that it is long distance therapy and support, > who's to say there > isn't a hidden agenda in all this. Remember teen screen? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Very often the only thing worse than what they did, is what they plan to do. back from the hearing I am just back from a long day in DC. It did not go so well for us. Something you all might not have been able to see was all the hugging and kissing and handshaking going on before and after the hearing. A lot of chummy stuff going on. Very unsettling. There were also a lot of lies put forth by Gerberding and Insel. What weasles they were. Bob did a decent job, right up until he talked about chelation, which is when he basically said that we were all risking our kids with it because the payoff MIGHT be worth the risk. What he said was not encouraging. Harkin did a good job. He had a lot of background info but he was given blatantly false answers today by NIH and CDC. We need to correct what was not true with him asap and ask him to keep holding more hearings with more parental input. The part about the teleconferencing thing was hysterical. My first thought, that had me nearly peeing my pants, was the realization that they wanted kids to watch ABA on tv. Didn’t they just spend like a bazillion dollars and decide that watching tv CAUSES autism? Idiots. I did see this as dangerous because I can see schools and states saying “you people don’t need 1:1 in brick and mortar, you can just watch these dvds! Go away now!” I bet you anything that AS will be funding the next teletherapy project. Gag. Max was the only person with autism there today, despite the room being standing room only. He did a kick ass job (you will know that if you listened to the feed and never heard him yelling “Amtrak!”) lol The worst part was that this exact word for word hearing could have been help 7 years ago. We knew all the same stuff back then. We talked about all the same stuff. They lied the same lies. Everything. That means in 7 years we have not moved. Not progressed. That sucks ass. We need to do better. All in all, kinda worthless as hearings go but maybe ya’ll will get a taste for it and start calling and get more hearings with MORE input from our side. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 It's hard to remember one's lies. Re: back from the hearing The part about the teleconferencing thing was hysterical. My first thought, that had me nearly peeing my pants, was the realization that they wanted kids to watch ABA on tv. Didn’t they just spend like a bazillion dollars and decide that watching tv CAUSES autism? Idiots. I did see this as dangerous because I can see schools and states saying “you people don’t need 1:1 in brick and mortar, you can just watch these dvds! Go away now!” I bet you anything that AS will be funding the next teletherapy project. Gag. Holly- I laughed so hard at that I almost threw up :)Thanks for going and reporting back. I know it couldn’t be easy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007  There will be an avalanche of cost cuts. There will be laughable idiocy to rationalize same. Re: back from the hearing The Department of Education already gave Judith Favell and Celeste Foundation 7 figures $$$$ to research telehealth for autism so it could be validated. It is a poor excuse for real therapy, but you are exactly right - it is a way to cut costs at the expense of our children. Maybe in a rural area with zero access to services it is a valid substitute, but I spoke to Iowans (the one who testified about his family's experience with telehealth was in Sioux City - Iowa was part of the study) and all said that they can access services (not biomedical but ABA and related services) and they would reject the interactive video.I briefly address this issue in my submitted testimony that you can find in the files section of EOH.On Apr 17, 2007, at 9:28 PM, christine wrote: The part about the teleconferencing thing was hysterical. My first thought, that had me nearly peeing my pants, was the realization that they wanted kids to watch ABA on tv. Didn’t they just spend like a bazillion dollars and decide that watching tv CAUSES autism? Idiots. I did see this as dangerous because I can see schools and states saying “you people don’t need 1:1 in brick and mortar, you can just watch these dvds! Go away now!†I bet you anything that AS will be funding the next teletherapy project. Gag. Holly- I laughed so hard at that I almost threw up :)Thanks for going and reporting back. I know it couldn’t be easy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 But Drs can't do ABA. Re: back from the hearing NO, NO, NO, NO, NO!!!!!!!!!!!!!!!!!!!PLEASE...do not start with the "valid substitute in rural areas". If that is where you start, that is what you will get.For God's sakes people, we live in the United States of America, not Pakistan. If we can get $400,000 chemotherapeutic agents (with 3% response rates) to anyone, anywhere in this country, we can get ABA anywhere. I am SICK TO DEATH of people saying we can't provide ABA nationwide--we CAN. It is NOT too expensive; it is too expensive not to do it. Look at the $12M/$17M adult costs to see what you get if you DON'T get this illness treated. We spend 2 trillion dollars a year in this country on healthcare--2 trillion. OK, got that? Just to use one example, we spend $10 billion per year on only one drug-EPO, that is not even used in the UK for the most common indications it's used for here. We spend zillions of dollars on end of life care for terminally ill people. Go price out a stay in an intensive care unit for an elderly person with a hip fracture--you can fritter through half a million bucks for a single incident in no time at all. I am not saying we shouldn't do this; I AM saying that THEY ARE NOT MORE IMPORTANT THAN MY KID. I am so sick of hearing we cannot afford ABA. ABA is better studied and more efficacious than most drugs. We CAN afford it, and should never accept this video-crapola alternative. OK, need to calm down now...Jenna> > >> > The part about the teleconferencing thing was hysterical.  My first > > thought, that had me nearly peeing my pants, was the realization that > > they wanted kids to watch ABA on tv.  Didn’t they just spend like a > > bazillion dollars and decide that watching tv CAUSES autism?  Idiots. > >  I did see this as dangerous because I can see schools and states > > saying “you people don’t need 1:1 in brick and mortar, you can just > > watch these dvds!  Go away now!† I bet you anything that AS will be > > funding the next teletherapy project.  Gag.> >  > > > Holly- I laughed so hard at that I almost threw up > > Thanks for going and reporting back.  I know it couldn’t be easy.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 ABA most likely provides maximal benefit for those who are not/minimally mercury poisoned but whose "autism" etiology springs from viral challenge (MMR) rather than heavy metal poisoning following by an immunological insult. Those kids may not need chelation, but other supplements instead. The ABA would appear to help many of those kids. Re: back from the hearing The part about the teleconferencing thing was hystericalThe part about teleconferencing is sad. Now that Imus is gone, MSNBC will crash and burn. ABA works for somebody? Huh.Maybe they could turn MSNBC into an AS tele-teaching project like PBS Good Night Show?MSNBC. That could stand for Mass Sadistic Nefarious Brain-washing Company? They could start with Matt Roker, teaching him how to count his millions, keep quiet, and leave other people alone. The teacher could tell him that things in life hurt, and the great secret is not minding that things hurt.>> I am just back from a long day in DC. It did not go so well for us.> Something you all might not have been able to see was all the hugging and> kissing and handshaking going on before and after the hearing. A lot of> chummy stuff going on. Very unsettling.> > > > There were also a lot of lies put forth by Gerberding and Insel. What> weasles they were. > > > > Bob did a decent job, right up until he talked about chelation, which> is when he basically said that we were all risking our kids with it because> the payoff MIGHT be worth the risk. What he said was not encouraging. > > > > Harkin did a good job. He had a lot of background info but he was given> blatantly false answers today by NIH and CDC. We need to correct what was> not true with him asap and ask him to keep holding more hearings with more> parental input.> > > > The part about the teleconferencing thing was hysterical. My first thought,> that had me nearly peeing my pants, was the realization that they wanted> kids to watch ABA on tv. Didn't they just spend like a bazillion dollars> and decide that watching tv CAUSES autism? Idiots. I did see this as> dangerous because I can see schools and states saying "you people don't need> 1:1 in brick and mortar, you can just watch these dvds! Go away now!" I> bet you anything that AS will be funding the next teletherapy project. Gag.> > > > Max was the only person with autism there today, despite the room being> standing room only. He did a kick ass job (you will know that if you> listened to the feed and never heard him yelling "Amtrak!") lol> > > > The worst part was that this exact word for word hearing could have been> help 7 years ago. We knew all the same stuff back then. We talked about> all the same stuff. They lied the same lies. Everything. That means in 7> years we have not moved. Not progressed. That sucks ass. We need to do> better. > > > > All in all, kinda worthless as hearings go but maybe ya'll will get a taste> for it and start calling and get more hearings with MORE input from our> side. > > > > Holly> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007  The same company that provides security cameras for homeland security, er, I mean the company that provided the really big contribution to the PAC, er, I mean the back-slapping guy from West Texas who can provide the systems for 1500% of retail... thinks it's a good idea. Re: Re: back from the hearing The govenment is serious about telehealth. They invested several million dollars in getting it validated. One of the test areas is Iowa. They flew parents in to Florida then provided therapy and counseling through video by installing a video camera in the family's home.Wonder how the Patriot Act fits into this type of scenario?On Apr 17, 2007, at 11:52 PM, kerbob1 wrote:The part about the teleconferencing thing was hystericalThe part about teleconferencing is sad. Now that Imus is gone, MSNBC will crash and burn. ABA works for somebody? Huh.Maybe they could turn MSNBC into an AS tele-teaching project like PBS Good Night Show?MSNBC. That could stand for Mass Sadistic Nefarious Brain-washing Company? They could start with Matt Roker, teaching him how to count his millions, keep quiet, and leave other people alone. The teacher could tell him that things in life hurt, and the great secret is not minding that things hurt.>> I am just back from a long day in DC. It did not go so well for us.> Something you all might not have been able to see was all the hugging and> kissing and handshaking going on before and after the hearing. A lot of> chummy stuff going on. Very unsettling.> > > > There were also a lot of lies put forth by Gerberding and Insel. What> weasles they were. > > > > Bob did a decent job, right up until he talked about chelation, which> is when he basically said that we were all risking our kids with it because> the payoff MIGHT be worth the risk. What he said was not encouraging. > > > > Harkin did a good job. He had a lot of background info but he was given> blatantly false answers today by NIH and CDC. We need to correct what was> not true with him asap and ask him to keep holding more hearings with more> parental input.> > > > The part about the teleconferencing thing was hysterical. My first thought,> that had me nearly peeing my pants, was the realization that they wanted> kids to watch ABA on tv. Didn't they just spend like a bazillion dollars> and decide that watching tv CAUSES autism? Idiots. I did see this as> dangerous because I can see schools and states saying "you people don't need> 1:1 in brick and mortar, you can just watch these dvds! Go away now!" I> bet you anything that AS will be funding the next teletherapy project. Gag.> > > > Max was the only person with autism there today, despite the room being> standing room only. He did a kick ass job (you will know that if you> listened to the feed and never heard him yelling "Amtrak!") lol> > > > The worst part was that this exact word for word hearing could have been> help 7 years ago. We knew all the same stuff back then. We talked about> all the same stuff. They lied the same lies. Everything. That means in 7> years we have not moved. Not progressed. That sucks ass. We need to do> better. > > > > All in all, kinda worthless as hearings go but maybe ya'll will get a taste> for it and start calling and get more hearings with MORE input from our> side. > > > > Holly> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007  Added benefit, though- Think of all the surveillance technology they can put in the video equipment! Re: Re: back from the hearing I think many parents would reject the idea of allowing a video camera into their living space. Intrusive and creepy. On Apr 18, 2007, at 1:08 AM, King wrote:>> Wonder how the Patriot Act fits into this type of scenario?> > This is one of the first things that came to mind when I read about Telehealth (sorry-can't remember the corporate name). There is no way in hell I would trust those people to moniter my child or my family by video camera. Aside from the premise (and I am probably just paranoid) that it is long distance therapy and support, who's to say thereisn't a hidden agenda in all this. Remember teen screen? Quote Link to comment Share on other sites More sharing options...
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