Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Hi : At last year's DAN in DC, I met a couple with an autistic daughter. Both of the parents were MDs and seemed very well connected into the upper echelons of DAN. I ate lunch with them and we were going around the table telling our stories. After I related what I had done with my son and how he was doing, they both fell completely silent. Finally, the mom looked up at me, and said that she was happy my son was doing so well, but it was really hard for her to hear my story because she wished she had done what I did. What DID they do? They did biomed interventions, mostly chelation, and nothing else. They chelated for 4 years, starting when their daughter was 2. I asked what they used and they said " everything " . Every protocol, every chelator, flying all over creation, consulting all the top DANs and non-DANS. The result was " nothing " . Absolutely nothing. Not even her daughter's general overall health had improved. Despite having dumped copious amounts of mercury, lead and other metals, her daughter was still sick as a dog, with major GI and immune issues. Finally, they took a break from chelation, and put their child into a really strong ABA program and within 6 months, as their daughter learned to communicate, the aggression and frustration lifted and she became a much happier child. The mom and her husband wished they had done ABA and biomed TOGETHER. I tried to argue that maybe all the chelation had prepared their daughter to learn, but they were unconvinced. They kept saying that her health still had not improved at all--diarrhea just as bad as ever, her labwork still looking awful, etc. They argued forcefully that ABA had at last made their daughter HAPPY because she could communicate, and that ABA alone had reduced her behaviors. Who knows if that if really true, but I can tell you that the mom was completely racked with guilt because she felt she had allowed her child to be miserable for 4 years. I missed the whole afternoon segment because the couple peppered me with ABA questions for a long time thereafter. I am very active locally in steering parents to DAN, and many have had success with biomed. But the level of success has varied and 2 sets of those parents have stopped it altogether, one thinking it did nothing, and the other thinking their child actually regressed. Just as ABA does not work for everyone, neither does biomed. There are many, many paths to recovery. It is absolutely wrong to advocate against the use or availability of anything that has on balance been helpful to children, even if it has not helped yours. > > > > > > > > > > > > > > > > > > > > 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 19, 2007 Report Share Posted April 19, 2007 I used chelation seven years ago and my son got worse! Now I use a different approach and address all medical aspects of his autism. My son was not a regressor, he was born with autism. He is a wonderful amazing child. ABA did that. Theory of Mind did that. ABA helps with the much needed synapses that keeps gray matter from pruning itself. Use or lose it. ABA directs those neural pathways in brain processing. So please no advice. It is not needed. My empirical research is not obsolete. My degree is in psychology, my minor biology. I have a lot of research available to me. I don't need to go to DAN lectures to understand the biological aspects of what is going on with my child.Not all children respond to chelation either. No one approach is a cure for autism. Each child has specific needs and it is not a one size fits all. Golly if you have all the answers for all the parents then you must be a gazillionair! The world is not yet exhausted; let me see something tomorrow which I never saw before.- ************************************************************************* Re: back from the hearing Kathleen, If you followed Andy's advice 7 years ago, you might not have ever needed the ABA. Perhaps we're looking at this from different perspectives. Recovery is unacceptable to me. Cure is the only word I accept. Recovery is a half-assed solution. I don't care that it might be possible to teach my son to behave in any certain way. I won't be satisfied until his brain functions the way it is supposed to. Your empirical research on ABA is now obsolete. Let this sink in, you can not cure mercury poisoning with ABA. Those who continue to shove ABA down our throats are only giving us a band-aid. Modifying behavior will not make the brain work the way it is supposed to. And, touting ABA as a cure for autism will not hinder the drug companies in poisoning more babies for profit. > > > > > > > > > > >> > > > > > 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 19, 2007 Report Share Posted April 19, 2007 Chelation may not work in certain instances, although everyone has some amount of heavy metal (lead, mercury, arsenic, tin, aluminum, etc.), so chelation purely from a general health perspective is probably a good thing (unless the child is allergic or side effects occurs). Note that DMSA (dimerceptosuccinic acid) is a disulfide of a naturally occurring organic acid (succinic acid) which is known to be biochemically compatible. EDTA (ethylenediamine tetraacetic acid) is an amino acid. On a relative scale of pharmacological/biological agents, these agents are on the low to very low toxicity side of the ledger. That doesn't mean they're non-toxic or safe in all instances. Separating chelation from other aspects of nutritional/biomedical intervention, we see that nutrition can go a long way to "frontload" nutrients and other components which the body requires to heal and to progress. The evolutionary condition is health/survival, which gets compromised through environmental intervention/insult and through the aging process. Various proteins, carbohydrates and in particular, fatty acids and fatty acid components (given that a high percentage of the biochemical structures in nervous tissue are lipids/phospholipids) as well as minerals and vitamins (cofactors), provide a balanced nutritional approach to rectifying damage. Note the body is in most instances self-healing. It is designed/evolved (we'll save the discussion of religion for another post) to heal itself. But it can only do that with proper nutritional intervention. So, even if you're not chelating, nutritional/biomed intervention is a critical piece to this puzzle. ABA and biomed can effectively work hand-in-hand in many instances for an appropriate intervention and ultimate success. I see it in my son. Re: back from the hearing Kathleen, If you followed Andy's advice 7 years ago, you might not have ever needed the ABA. Perhaps we're looking at this from different perspectives. Recovery is unacceptable to me. Cure is the only word I accept. Recovery is a half-assed solution. I don't care that it might be possible to teach my son to behave in any certain way. I won't be satisfied until his brain functions the way it is supposed to. Your empirical research on ABA is now obsolete. Let this sink in, you can not cure mercury poisoning with ABA. Those who continue to shove ABA down our throats are only giving us a band-aid. Modifying behavior will not make the brain work the way it is supposed to. And, touting ABA as a cure for autism will not hinder the drug companies in poisoning more babies for profit. > > > > > > > > > > >> > > > > > 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 19, 2007 Report Share Posted April 19, 2007 Thank you for going, Holly and everyone else. Thank you for reporting back. Pamela " Courage is doing what you're afraid to do. There can be no courage unless you're scared. " Eddie Rickenbacker, top US fighter ace, WWI From: EOHarm [mailto:EOHarm ] On Behalf Of Holly Bortfeld Sent: Tuesday, April 17, 2007 9:03 PM EOHarm Cc: ACHAMP Subject: 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 21, 2007 Report Share Posted April 21, 2007 Holly, I am sitting here checking the web: Celeste Foundation as I watch C- SPAN the Harkins Autism Hearing. The Celeste Foundation website does not convince me that the foundation is a legitimate nonprofit organization. Celeste does not have a long history, they do not disclose their board members. The address of Mount Dora Florida is curious. The small town of 9,418 pop (2000 census). Could it still the winter home for the rich? The rich often retire in Florida w/large trust funds and trusting aging minds. The name rang a bell for me. I ran across the town name while backgrounding an Topeka resident(formerly of Mount Dora) who makes her living gathering money w/the promise of making small movies of no note and selling her book on how to write and sell a screenplay. Do the s spend time in Florida? Check out the Movie: www.Lithium Springs. Yes, there is a real Lithium Springs. > > > > > > > > > > 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 21, 2007 Report Share Posted April 21, 2007 Celeste received a large grant from either NIH or Dept of Education to research the use of televideo to deliver services to children with autism. Some of the study subjects were in Iowa, as we saw in the hearing on Tuesday. There was a conference on this in February paid for by DOE. Looks like some big $$$$ are going into telehealth. The DOE's telehealth funding continues right now with at least one other grant to train telehealth to psychologists in Des Moines and Washington D.C.,and the conference info is below that: Grant Number: H325D040056 Preparing Leaders in Disability and Pediatric Psychology: Integrating Practice and Educational Policy Project Director: Northup, ; Harper, Dennis University of Iowa 100 Gilmore Hall Iowa City, IA 52242 Voice: 319-335-5639; Fax: 319-335-6145 E-mail: daniel-clay@... Beginning Date: 1/1/2005 Ending Date: 12/31/2008 OSEP Contact: Gilmore Voice: 202-245-7354 E-mail: bob.gilmore@... Purpose: This project will train 11 doctoral-level psychologists in providing coordinated and comprehensive services to children with disabilities across school and health settings, and in informing and shaping relevant public policy. Method: The project consists of 5 major training components: (a) general and discipline-specific coursework; ( specialized coursework in disability and pediatric psychology; © specialized practica in disability and pediatric psychology; (d) specialized coursework in education and disability public policy; and (e) practica in public policy at the state and national levels. Students will receive advanced clinical training in disability and pediatric psychology by working in rural areas and in specialty clinics at the Center for Disability and Development, and by learning the fundamentals of telehealth service delivery using advanced information technologies. All trainees will receive intensive leadership training by working as research and administrative assistants to core project faculty, as well as serving apprenticeships related to disabilities and child health care public policy issues at both the state and national capitols in Des Moines and Washington, DC. 27. Using Interactive Video to Support Families of Young Children with Autism (Service Delivery). DANIELLE LISO (Capitol Autism Services), F. Hine (Celeste Foundation), and Katrina Wilburn-beckhom (Celeste Foundation) Abstract: This poster describes a research project funded by the US Department of Education, Office of Special Education Services, linking families of young children with autism and a wide range of professionals via interactive telehealth technology. Enabling families to receive live in-home support three to seven times per week, the system helps professionals provide additional training and immediate feedback to the families from remote locations. A description of the ABA-based, individualized training curriculum and the telehealth service delivery model will be presented. In addition, data on child behavior change, parent accuracy of implementation, quality of life, parenting stress, and parent/professional satisfaction with the technology will be presented. Implications for future research and the generalized application of this service delivery model to support both caregivers and providers will also be discussed. On Apr 21, 2007, at 11:13 AM, goldyer1 wrote: Holly, I am sitting here checking the web: Celeste Foundation as I watch C- SPAN the Harkins Autism Hearing. The Celeste Foundation website does not convince me that the foundation is a legitimate nonprofit organization. Celeste does not have a long history, they do not disclose their board members. The address of Mount Dora Florida is curious. The small town of 9,418 pop (2000 census). Could it still the winter home for the rich? The rich often retire in Florida w/large trust funds and trusting aging minds. The name rang a bell for me. I ran across the town name while backgrounding an Topeka resident(formerly of Mount Dora) who makes her living gathering money w/the promise of making small movies of no note and selling her book on how to write and sell a screenplay. Do the s spend time in Florida? Check out the Movie: www.Lithium Springs. Yes, there is a real Lithium Springs. > > > > > > > > > > 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...
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