Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 If we truly want to get the word out then we have to do it! Please join your local Chapter and if you don't have one in your area then let us know and we will send you the information on how to start one. Together we can do anything. Kathy Coalition-Northern New York Chapter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 - I needed to reply to your email. I, too, am extremely frustrated that people, especially doctors, just aren't listening. I look back and know that my son had food allergies from day 1, but the doctor never took my complaints seriously. It took me almost 5 years to convince someone to take this seriously. In February, my 1 year old started to slip just like my son did. They didn't lose things overnight, just very gradually slipped into " autistic " behaviors. She lost 6 words and 2 signs over the next 3 months. Eye contact and social behaviors also decreased. Not enough to get her an autism diagnosis, but I believe she was well on her way to getting one. We saw Dr. Goldberg with her in July. Within a month she had regained all but one word, both signs, and was back to her flirtatious self with strangers in checkout lines. No more zoney episodes and no more clinging to me. The only thing we did was put her on Famvir and check her for food allergies and remove those foods that she couldn't tolerate. It breaks my heart that no one did this for my son and that as a result he has had to struggle so hard to get where he is today. Our new pediatrician supports what we are doing since I am telling him that it is making a tremendous difference. Still, he doesn't believe in all this and smirks whenever we talk about it. He doesn't believe my daughter was becoming autistic. I'm not sure there is anything I can do to convince him, short of taking her off the meds and seeing what he says in a couple of years (NOT an option). Thank God for Dr. Goldberg. Now at least one of my children will be able to enjoy good health and normal development and social relationships. I was able to convince our old pediatrician (we just moved) what an incredible difference Dr. Goldberg's protocol can make, but it took time watching my son becoming healthier - nothing I said made much difference, only the unrefutable blood test results. He is now referring patients to Dr. Goldberg. I wish he would take the next step and actually learn the protocol himself, but that may take more time. In the meantime, I plan to keep him up to date on how my kids are doing. Hopefully this new doctor will come around too, but in the meantime at least he is not interferring. Reaching one person at a time with scientifically backed results is the only place I can start right now. After I get my kids healthy I'll tackle larger groups. Just keep trying to get the message out - one voice can make a difference. I'm not sure my anger will ever go away about all the lost years, but I'll try to channel it into making a difference for someone else down the road (except in the middle of the night when I lie awake wanting to do bodily harm to those doctors who could have helped but didn't....). Hang in there - this is a great place to vent! On Sun, 30 Sep 2001 10:43:16 EDT whcmccain@... writes: >Hi all, >I have been reading Barry Kaufman's book The Son-Rise Program. This >is a >really good book and has given me a lot to think about. Mainly, it >has >changed my thinking about my son's progress and made me start to be >happy >about his success's and to not compare those to other children. The >really >weird thing is that the more I read it, the more I agree with Dr. >Goldberg >that my son indeed does NOT have autism but is suffering from >something else >entirely. I have been watching our home movies recently and have >discovered >that I am not CRAZY. I had come to believe that my son was indeed >autistic >from birth and that I just hadn't caught it. THAT IS JUST NOT SO! I >have >video tape of my son at 2 years old coloring and using a fork--both he >can >not do now--, waving, making direct eye contact, taking notice of >people >coming in and going out of the room, and using pronouns correctly. My >son is >considered severe on the autism spectrum. Kaufman's son was also >considered >severe. Of course, they caught his autism very early. By 19 months >old, >they had already been working with him for a while. In one section of >the >book, he describes the first time his son cried for his mom. He had >never >done that before. MY SON HAS ALWAYS PREFERRED MY COMPANY TO OTHERS >AND HAS >ALWAYS MADE THAT KNOWN. Sorry to vent on this. I have just had an >incredible realization and yet, still feel so frustrated. Watching >our home >videos, it is hard to believe that the child sitting with me now is >even the >same child. I believe that the chicken pox vaccine my son had at 2 >years and >2 months is what pushed his immune system over the top! What is my >point in >all of this? I have no idea. I just need to vent to others who >probably >also feel my frustration. I wish I could get some " autism expert " to >watch >our home videos and then explain to me what happened. Will we ever >get >other's to listen to us? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2001 Report Share Posted September 30, 2001 How do we find out if we have one in our area? Thank You, If we truly want to get the word out then we have to do it! Please join your local Chapter and if you don't have one in your area then let us know and we will send you the information on how to start one. Together we can do anything. Kathy Coalition-Northern New York Chapter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Where do you live? Kathy NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 We are in San Antoino, TX Where do you live? Kathy NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 > Where do you live? Kathy NNY > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 , I sent your message to who is our contact in Texas. If you don't hear from hear please let me know. Sometimes my messages seem to disappear into thin air! Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 I forwarded your message to Cyndy and Marc Shure. They are in Southern California. Tina is in Northern. There is one Chapter in California. Kathy NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Hi I'm new to this website. Is there a Chapter in New Jersey? Thanks, Janine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Janine, Where in NJ do you live? I live in Elmwood Park, Bergen County? My name is Michele. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 We are in the North Dallas Area. I will travel anywhere in DFW Metroplex to be involved. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Janine, I am working on setting up a chapter in NJ and NYC area. I will keep you informed. Rosemarie Covucci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Is there an adult group in Wash., DC area? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2001 Report Share Posted October 3, 2001 ; Thanks for sharing your thoughts. You took the words and heartache right out of me. I could cry everytime I see videos/pictures of me giving my son cow's milk because no one thought to test him for a milk allergy. My son threw up, screamed, and had explosive diarhea for the first four months of his life. ( " He is just colicky " was the response.) We were told to put rice cereal in his formula to keep it down when he was just two weeks old. If I only knew then what I know now. He is getting much better thanks to Dr G. I too channel my anger appropriately and advise all I know to get their newborns tested for allergies if anything seems abnormal. I am actually a believer that all newborn's should be tested for food allergies the minute they are born so the mom's know what to expect. They should also test the strength of the child's immune system prior to any vaccinations; but that is another soapbox. Thanks again. Suzanne _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2001 Report Share Posted October 3, 2001 Janine, I forwarded your name to Rosemarie in New Jersey. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 Hi Michele! I'm from in Monmouth/Ocean county area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 Thankyou! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 Thankyou to everyone for there response. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2001 Report Share Posted October 4, 2001 , I know how you feel. My son was playing pat-a-cake at 10 mos., which he could no longer do at 19 mos. And it makes me cry when a therapist asks if he can do a certain skill and I think to myself, " no, but he used to " . And you feel like nobody believes you when you say what they used to be able to do. Just venting, Kathy P. Autism Hi all, I have been reading Barry Kaufman's book The Son-Rise Program. This is a really good book and has given me a lot to think about. Mainly, it has changed my thinking about my son's progress and made me start to be happy about his success's and to not compare those to other children. The really weird thing is that the more I read it, the more I agree with Dr. Goldberg that my son indeed does NOT have autism but is suffering from something else entirely. I have been watching our home movies recently and have discovered that I am not CRAZY. I had come to believe that my son was indeed autistic from birth and that I just hadn't caught it. THAT IS JUST NOT SO! I have video tape of my son at 2 years old coloring and using a fork--both he can not do now--, waving, making direct eye contact, taking notice of people coming in and going out of the room, and using pronouns correctly. My son is considered severe on the autism spectrum. Kaufman's son was also considered severe. Of course, they caught his autism very early. By 19 months old, they had already been working with him for a while. In one section of the book, he describes the first time his son cried for his mom. He had never done that before. MY SON HAS ALWAYS PREFERRED MY COMPANY TO OTHERS AND HAS ALWAYS MADE THAT KNOWN. Sorry to vent on this. I have just had an incredible realization and yet, still feel so frustrated. Watching our home videos, it is hard to believe that the child sitting with me now is even the same child. I believe that the chicken pox vaccine my son had at 2 years and 2 months is what pushed his immune system over the top! What is my point in all of this? I have no idea. I just need to vent to others who probably also feel my frustration. I wish I could get some " autism expert " to watch our home videos and then explain to me what happened. Will we ever get other's to listen to us? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 In a message dated 10/5/2001 6:53:52 AM Central Daylight Time, kjm@... writes: > And my > autistic son is a twin, so I had his still-normal sister in most of > the videos right next to him -- and *he* stands out in those as the > more social, more verbal and more interactive child. Oh, Kathleen. That is very telling!! I have decided that God has put this fire in my belly--and yours--for a reason. He wants us to fight for our children. I have prayed the Prayer of Jabez this morning and feel up for the battle today! Let's do it! All the best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 My child who is 14 was also a " star " baby. I remember, among other things, taking him to a first birthday party of a friend and his participation with the older siblings impressing everyone. He was one... don't let other people tell you something you know isn't true. Re: Autism > - > A couple of years ago I was asked to be part of a presentation on > autism and went back to our old videos and pulled clips for the > presentation and had the same reaction as yours -- and wept. I also > kept thinking that there must have been pointers to his autism that I > missed, but when I look at the videos I still see nothing. And my > autistic son is a twin, so I had his still-normal sister in most of > the videos right next to him -- and *he* stands out in those as the > more social, more verbal and more interactive child. Not so any > more. I understand your frustration first hand. > --Kathleen-- > > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 - A couple of years ago I was asked to be part of a presentation on autism and went back to our old videos and pulled clips for the presentation and had the same reaction as yours -- and wept. I also kept thinking that there must have been pointers to his autism that I missed, but when I look at the videos I still see nothing. And my autistic son is a twin, so I had his still-normal sister in most of the videos right next to him -- and *he* stands out in those as the more social, more verbal and more interactive child. Not so any more. I understand your frustration first hand. --Kathleen-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 Whatever it takes, yes our children are worth it and I am determined to see the day that we know what has caused this and can not only see our children cured but also prevent other children and families from having to face the struggles we all experience daily. --Kathleen-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 At 07:33 PM 1/15/02 -0500, you wrote: >I am being told that 4 out of 5 people with autism are males. Can anyone >verify that this is in fact true, and if so, anyone have any references >to why? Wayne, I've heard this as well. In fact I've seen it at my son's ABA school where a quick walk around the hallways and classrooms bears this out. Why is a question I've been wondering about myself. I am also wondering if it may be that when a female is autistic do they tend to have worse symptoms on average than a male on average? Marty Website Creation Made SIMPL http://face2interface.com/Home/Demo.shtml WebSafe Color Picker -- http://face2interface.com/WebSafe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 This is from a summary of some DAN! conference " A defective metallothionein could explain many of the symptoms of autism, including sensitivity to heavy metals, zinc depletion and copper overload, reduced stomach acid, incomplete breakdown of proteins. Since metallothionein production is enhanced by estrogen and progesterone during early development, females will be better protected than males against heavy metals. " Talk wrote: > I am being told that 4 out of 5 people with autism are males. Can > anyone > verify that this is in fact true, and if so, anyone have any > references > to why? > Thanks > > Wayne Obie > Media & Public Relations > Talk International.com > communications@... Quote Link to comment Share on other sites More sharing options...
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