We are compiling a list of support groups in the Mid-Mo area...If you recommend one, please comment and let us know. If you have a regional one, we will take that too.
When the series airs, we can post these places and groups online.
Thanks!
Wednesday, November 7, 2007
HELP-Support Groups
We are compiling a list of support groups in the Mid-Mo area...If you recommend one, please comment and let us know. If you have a regional one, we will take that too.
When the series airs, we can post these places and groups online.
Thanks!
Pushing on
We have about 2-3 more shoots left. We are doing well. We thank everyone who is helping us. I am very behind on messages and emails...I am doing my best to get caught up. Keep your comments coming!
Monday, November 5, 2007
Weinmaster-First View
Here is a sneak peek from our webcam when we went to Kansas. Thanks Jessica for doing this!
Story Idea-schools, family, safety, resources
This person wants more coverage on a wide range of issues. This item was emailed to this blog.--AR
Thank you SO much for covering this story in your area. I wish our local new station would cover something similar.
I am a mother of 4, two children are on the spectrum. Both of my children on the spectrum have been diagnosed with PDD-NOS. My 6 year old son is mild mannered, verbal and very intelligent. People often tell me that I spoil him too much and that "it's not that bad". They often don't understand that Autism is not rocking and hand flapping. There are other self stimulatory behaviors.
My daughter is 4 years old and she does not have speech that is well understood, but she trys her hardest to speak, she is a bit agressive, but can be sweet most of the time. I hate that people just think that I am a bad parent.
It would be beneficial to cover some of these issues:
1. Local and national resources - often when parents receive the diagnosis they are not directed to the next step.
2. Affect on sibilings and resources for them. - My five year old son has stepped into a "care taker" roll for the other children.
3. Safety issues for the individual with autism - My 6 year old son has very scripted "echolalic" speech it would be difficult if he were lost and a stranger asked his address or other vital information. He could answer, but not an appropriate response. Others are non verbal and would not be able to respond or know how to ask for assistance
4. Affects of disability on a marriage
5. Education system and Autism.
6. Rights of the individual with Autism and their parents.
Again - Thank you for doing this story! I wish you the best.
-Meredith, Columbus, OH
I am a mother of 4, two children are on the spectrum. Both of my children on the spectrum have been diagnosed with PDD-NOS. My 6 year old son is mild mannered, verbal and very intelligent. People often tell me that I spoil him too much and that "it's not that bad". They often don't understand that Autism is not rocking and hand flapping. There are other self stimulatory behaviors.
My daughter is 4 years old and she does not have speech that is well understood, but she trys her hardest to speak, she is a bit agressive, but can be sweet most of the time. I hate that people just think that I am a bad parent.
It would be beneficial to cover some of these issues:
1. Local and national resources - often when parents receive the diagnosis they are not directed to the next step.
2. Affect on sibilings and resources for them. - My five year old son has stepped into a "care taker" roll for the other children.
3. Safety issues for the individual with autism - My 6 year old son has very scripted "echolalic" speech it would be difficult if he were lost and a stranger asked his address or other vital information. He could answer, but not an appropriate response. Others are non verbal and would not be able to respond or know how to ask for assistance
4. Affects of disability on a marriage
5. Education system and Autism.
6. Rights of the individual with Autism and their parents.
Again - Thank you for doing this story! I wish you the best.
-Meredith, Columbus, OH
Sunday, November 4, 2007
Saturday, November 3, 2007
Story Idea-Aspergers/awareness
This person wants more coverage of awareness of the spectrum. This item was emailed to this blog--AR
The main problem I have had to face with my 5 year old son who has Aspergers Syndrome is the fact that most people seem to think all kids on the spectrum are exactly the same.
I hear all the time that well he talks some, he does not sit and rock....etc.. People need to know that there are different levels to each spectrum disorder, no 2 kids will be the same!
I also have had a hard time getting him OT and PT services because he is not "severe enough". The fact that he cannot pedal a bike so he can ride his bike with the neighborhood kids does not seem to matter, a 20 to 24 month developemental delay is not enough for services.
He has been in speech therepy since 2 1/2 years old and he is almost 5 1/2 - he still is not understandable to a unfamiliar listener, only a careful familiar listener can make out what he is saying and that is only 75% of the time.
His school sees no issues - they dont want to have to put out the money for services for him - thats what it is all about!
The main problem I have had to face with my 5 year old son who has Aspergers Syndrome is the fact that most people seem to think all kids on the spectrum are exactly the same.
I hear all the time that well he talks some, he does not sit and rock....etc.. People need to know that there are different levels to each spectrum disorder, no 2 kids will be the same!
I also have had a hard time getting him OT and PT services because he is not "severe enough". The fact that he cannot pedal a bike so he can ride his bike with the neighborhood kids does not seem to matter, a 20 to 24 month developemental delay is not enough for services.
He has been in speech therepy since 2 1/2 years old and he is almost 5 1/2 - he still is not understandable to a unfamiliar listener, only a careful familiar listener can make out what he is saying and that is only 75% of the time.
His school sees no issues - they dont want to have to put out the money for services for him - thats what it is all about!
Thank for listening - MM, Kansas
Story Idea-Help
This person wants coverage on where to go and what to do if their child is diagnosed with autism. This item was emailed to this blog --AR
I think you should cover were parents can get help once they find out if they have a child with autism. It is very stressful to find out and lots of couples split up. There are thousands of sights that tell you the symptoms but not many that tell you about programs, funding, the best schools, and how to keep your marriage and family together. You need to tell people about the best case and the worst case. You need to show how many different families cope with autism, so what they are doing can be passed down.
None of this pointing fingers about what may cause Autism. We all know all that stuff. We need to know what we as a family and a community can do to help autistic people and their families cope with autism. Were can we help find a cure? Who is working to find a cure? What companies are supporters of Autism research?
I think you should cover were parents can get help once they find out if they have a child with autism. It is very stressful to find out and lots of couples split up. There are thousands of sights that tell you the symptoms but not many that tell you about programs, funding, the best schools, and how to keep your marriage and family together. You need to tell people about the best case and the worst case. You need to show how many different families cope with autism, so what they are doing can be passed down.
None of this pointing fingers about what may cause Autism. We all know all that stuff. We need to know what we as a family and a community can do to help autistic people and their families cope with autism. Were can we help find a cure? Who is working to find a cure? What companies are supporters of Autism research?
Story Idea-Schools
This person wants more coverage on school issues. This item was emailed to this blog--AR
Hi!
I am the mother of an autistic 7yr. old, beautiful little girl. While we always see what goes on with kids and their families with autism, but the one thing that I have yet to see is coverage about the obstacles we parents face dealing with the school districts. This is a huge problem, and I for one am sick and tired of watching my daughter struggle, and when I seek more help from the district, they do nothing. Teachers as well as the chairpersons etc.., pretend that everything is fine, that your child does not need the extra help. I could go on and on, and in detail, but it would be too much to write out.....
Hi!
I am the mother of an autistic 7yr. old, beautiful little girl. While we always see what goes on with kids and their families with autism, but the one thing that I have yet to see is coverage about the obstacles we parents face dealing with the school districts. This is a huge problem, and I for one am sick and tired of watching my daughter struggle, and when I seek more help from the district, they do nothing. Teachers as well as the chairpersons etc.., pretend that everything is fine, that your child does not need the extra help. I could go on and on, and in detail, but it would be too much to write out.....
I think the public needs to know this about autism
This person has a list of what they think we should cover. This item was emailed to this blog--AR
I think the public needs to know this about autism
1. treatment is NOT covered by medical insurance,( ABA) the educational system is required to provide that service toyou , but sadly they prefer to do the least amount they can get away with and the innoccent children are the victoms here.
2. the people claiming to be quailified to provide aba, most are NOT
3. Do not trust your local school district, they do not even think you should have a say in your own childs welfarebecause they are paying and not you.
4. If you know someone with a child diagnosed with Autism, They need your help and support more than you can imagine. Just because the child is quiet, is very goodlooking, or seems fine, dont let that fool you into thinking its not that bad, babysit the child for a long period of time at least overnight and you will get a better understanding of the situation.
5. There is a special place in heaven for ALL MOMS of CHILDREN WITH AUTISM !
I think the public needs to know this about autism
1. treatment is NOT covered by medical insurance,( ABA) the educational system is required to provide that service toyou , but sadly they prefer to do the least amount they can get away with and the innoccent children are the victoms here.
2. the people claiming to be quailified to provide aba, most are NOT
3. Do not trust your local school district, they do not even think you should have a say in your own childs welfarebecause they are paying and not you.
4. If you know someone with a child diagnosed with Autism, They need your help and support more than you can imagine. Just because the child is quiet, is very goodlooking, or seems fine, dont let that fool you into thinking its not that bad, babysit the child for a long period of time at least overnight and you will get a better understanding of the situation.
5. There is a special place in heaven for ALL MOMS of CHILDREN WITH AUTISM !
My sons latest update
Julie is keeping us updated with her son. Here is the latest. This item was emailed to this blog.--AR
Hello,
Just wanted to keep you updated with my 5 year old boy.I had a hair analysis done a year ago showing 95% toxins, but I chose not to cehalate do to risks associated with DMSA.I since moved out of PA.I guess there is a lot of mercury hovvering over that state from coal.The same is with Iowa.
Both my parents and sons fathers parents live down the road from power plants.My 8 dental fillings and then the biggest his vaccs.I believe all comtributed to his autism leaving him speechless.I went to the natural path/homeopath.She gave my son a remedy of four tiny dissolvable I believe were some kind of salt.We werent allowed to touch them.I put them in his mouth when he was sleeping.She also gave me a supplemnent to take 3 times a day 2 capsules I break open and mix with drink.They are NAC to promote glutithione to help his body start naturally excreting toxins.She said we would do a urine analysis after we get some of this stuff moving through him.
The first day of the supplement he had diahrea rel bad all day.It went away the next day.I spoke to the natural path and she said that was good it means he got rid of something.i then heard about Zeolite drops and asked her about those.She said they werent proven to work and to follow his treatment with her.
I applied on line to participate in a study for children 3 to 11.Not everyone is accepted to participate, but I am.Now I am kind of stuck and not sure which way to go.Its hard because I cant do both right now.The study will be providing free Zeolite and followng up for 90 days.I am assuming this will be the proof from the 80 some kids they are studdying that Zeolite does work.
My sons natural path gave me another supplement to take called HLC Mindlinx.I can use supplements and is recommended for the study for 2 months but no other cehalation.The next step with the natural path is to detox, so I need to decide in a month or so.This HLC is due to gluten and dairy proteins being broken down in the gut into peptides with opiate properties similar to endorphind and opiate drugs.Not only gluten containing dairy generate exorphins-meat and some vegetables also.
HLC has two new strains that can break down these damaging exorphins in the gut before they can be absorbed.I dont know of any problems my son has with wheat or dairy.I do know the brain evolves from the bottom up and our immune systom developes first.I definitely think all disease or disorder are associated with the immune systom no doubt.after one dose my son made a little bit more eye contact, but nothing else yet.I will let you know what else goes on.
Thank you for your time.
Sincerely,-Julie Shaffer
Hello,
Just wanted to keep you updated with my 5 year old boy.I had a hair analysis done a year ago showing 95% toxins, but I chose not to cehalate do to risks associated with DMSA.I since moved out of PA.I guess there is a lot of mercury hovvering over that state from coal.The same is with Iowa.
Both my parents and sons fathers parents live down the road from power plants.My 8 dental fillings and then the biggest his vaccs.I believe all comtributed to his autism leaving him speechless.I went to the natural path/homeopath.She gave my son a remedy of four tiny dissolvable I believe were some kind of salt.We werent allowed to touch them.I put them in his mouth when he was sleeping.She also gave me a supplemnent to take 3 times a day 2 capsules I break open and mix with drink.They are NAC to promote glutithione to help his body start naturally excreting toxins.She said we would do a urine analysis after we get some of this stuff moving through him.
The first day of the supplement he had diahrea rel bad all day.It went away the next day.I spoke to the natural path and she said that was good it means he got rid of something.i then heard about Zeolite drops and asked her about those.She said they werent proven to work and to follow his treatment with her.
I applied on line to participate in a study for children 3 to 11.Not everyone is accepted to participate, but I am.Now I am kind of stuck and not sure which way to go.Its hard because I cant do both right now.The study will be providing free Zeolite and followng up for 90 days.I am assuming this will be the proof from the 80 some kids they are studdying that Zeolite does work.
My sons natural path gave me another supplement to take called HLC Mindlinx.I can use supplements and is recommended for the study for 2 months but no other cehalation.The next step with the natural path is to detox, so I need to decide in a month or so.This HLC is due to gluten and dairy proteins being broken down in the gut into peptides with opiate properties similar to endorphind and opiate drugs.Not only gluten containing dairy generate exorphins-meat and some vegetables also.
HLC has two new strains that can break down these damaging exorphins in the gut before they can be absorbed.I dont know of any problems my son has with wheat or dairy.I do know the brain evolves from the bottom up and our immune systom developes first.I definitely think all disease or disorder are associated with the immune systom no doubt.after one dose my son made a little bit more eye contact, but nothing else yet.I will let you know what else goes on.
Thank you for your time.
Sincerely,-Julie Shaffer
Weinmaster
To be honest with you, after we got back from Kansas I was emotionally exhausted. I had to take a few days to let my mind relax before expressing my thoughts about the trip.
I have been talking to Linda since my first story in July. She brought to the forefront that there is an entire autism community that rarely if ever gets its voice heard. She has watched our entire series unfold. It was a pleasure to finally meet her.
This family's courage and determination to "bring back their son" struck a cord with me. They are doing everything in their power to get Adam to recover from autism the best he can.
While I don't have children, I can't imagine the pain Linda has gone through when doctors told her to institutionalize Adam. By alternative methods, Adam lives at home and needs assistance, but more or less has made great strides in progressing to what his parents hope to be close to independent.
Adam is not your typical teenager. He loves Ninga Turtles, Batman, and Nintendo games. It was hard for me to see this guy who is taller and bigger than me act like a person half his age.
At the same time, Adam is extremely likable and funny. He showed us his house. His basement is a really cool hideout with all of his toys. He was so talkative. Scott, our photog really hit it off with him. Adam got to talk all about his games to him. Unfortunately, I am not an expert on boy-geared Nintendo games. ;-)
We spent the night in Lawrence. The following day we went to the clinic with Adam and Linda. This was a very hard--but needed--experience for me. Adam had a mini meltdown. There were some issues of not getting enough blood for a sample. Linda says this overloaded his sensors and he got worked up.
We had a wireless mic on Linda the entire time. The raw footage is hard to watch. Adam begins to get upset then leaves the room. It is nearly impossible to control someone his size. He went into the hallway screaming and crying. Linda followed to calm him down. Scott was brilliant in shooting this private moment. He stayed in one hallway while Linda and Adam were in another. Scott only shot Linda. Adam wasn't aware he was being filmed. I thought this was a smart move by Scott because we didn't want to trigger him to get more upset. However, we did want to capture all of this because of the importance for other people to see it.
At the same time, Adam is extremely likable and funny. He showed us his house. His basement is a really cool hideout with all of his toys. He was so talkative. Scott, our photog really hit it off with him. Adam got to talk all about his games to him. Unfortunately, I am not an expert on boy-geared Nintendo games. ;-)
We spent the night in Lawrence. The following day we went to the clinic with Adam and Linda. This was a very hard--but needed--experience for me. Adam had a mini meltdown. There were some issues of not getting enough blood for a sample. Linda says this overloaded his sensors and he got worked up.
We had a wireless mic on Linda the entire time. The raw footage is hard to watch. Adam begins to get upset then leaves the room. It is nearly impossible to control someone his size. He went into the hallway screaming and crying. Linda followed to calm him down. Scott was brilliant in shooting this private moment. He stayed in one hallway while Linda and Adam were in another. Scott only shot Linda. Adam wasn't aware he was being filmed. I thought this was a smart move by Scott because we didn't want to trigger him to get more upset. However, we did want to capture all of this because of the importance for other people to see it.
In less than ten minutes, the episode was done and over with. Adam apologizes to Linda and they hug. This entire experience was beyond compelling. I wasn't even in the room due to space, but to hear this account was emotional.
Needless to say, this was moving trip. I can't wait to tell you the rest of their story.
Friday, November 2, 2007
Celebrity ASD chidren overcome autism
Why is it if your rich and famous your chances of overcoming autism seems to be better.How often do you hear of a celebrity whoes child cant talk or is at the same level of the average child with autism.Its not fair to the rest of us to know if you had enough money your child could overcome autism.I think they should take a chunk of the research money and give these children the same chance.If we cant find accurate answers in 67 years of researching then the research isnt looking very promising.What would be promising is extra money put into what is working for the celebrities.A little bit would go a long way to the 1/150 children that are diagnosed.Im happy for the celebs, but its heartbreaking to know if I only had their resources my child would be doing a lot better.When your a parent of a child with autism it becomes a mission, a drive, a fight, and feelings you never felt before.When your a celebrity this mission is easier and evident to the media.Honestly how many celebrities have children or relatives on the spectrom that was misdiagnosed over the years or overlooked over the past decades.I bet hardly any.Proving that better diagnosis is BS!Can we have help making our children celebrities so they can do better.Give our amazing children a real chance let them be the star of a show.
Thursday, November 1, 2007
You know what?
To You and Your Timeline Writing:I really do believe you, until now I would never read anything about how A or AS came to be.I just took the bull by the horns and gave it all I could.and did whatever I could do to take care of my son at one point I needed help in day to day care for him as I myself was sinking as a person.You know I went into Karchi,Pakistan as my husband is from there and his sister was going to help but as things go the sister and I didnt get along.You know I cant get into what has changed my mind but I will tell you comb with what you have writen let me remember something I have so far known but never had time to think about.I want to put two and two togeather before,Later.
To Your unbelievable but truthfull point.You know what?I am sur it is a prev illness as for my sons illness I am almost sure it is because of meds I take myself. You know you are trying to get people to take respon for things they maybe cant face.Like now I have to face maybe if I had paid more atten to myself maybe my son would not be ill! You know my boys are 17 yrs apart.I only have two children my youngest has AS I knew something was wrong from the very start.he was sooo quite.I got help as soon as they would give it.Then ECI coming into my home Metro Care for almost two years helping me and my son learn and move on.But it was too much for me I couldnt absorb anything.I was in a whirlwind.When I went to bed at night I could feel myself spin.it was just tooo much.And now I have to face right here right now It' my fault! Maybe thats what the AustismAH or whatever want to shield us mothers from.It cant be handled!I agree some monies have to be handed out to us parents so we can care for our childen great point.Money always shows who really CARES.Thanks for your expet.You are a DIAMOND.
To Your unbelievable but truthfull point.You know what?I am sur it is a prev illness as for my sons illness I am almost sure it is because of meds I take myself. You know you are trying to get people to take respon for things they maybe cant face.Like now I have to face maybe if I had paid more atten to myself maybe my son would not be ill! You know my boys are 17 yrs apart.I only have two children my youngest has AS I knew something was wrong from the very start.he was sooo quite.I got help as soon as they would give it.Then ECI coming into my home Metro Care for almost two years helping me and my son learn and move on.But it was too much for me I couldnt absorb anything.I was in a whirlwind.When I went to bed at night I could feel myself spin.it was just tooo much.And now I have to face right here right now It' my fault! Maybe thats what the AustismAH or whatever want to shield us mothers from.It cant be handled!I agree some monies have to be handed out to us parents so we can care for our childen great point.Money always shows who really CARES.Thanks for your expet.You are a DIAMOND.
My autism timeline
Here is a timeline of my own autism (mercury poisoning) journey.
1967—I realize there is something wrong with me. I’m about eight years old. While I can communicate fine when I need to, I am pretty much unable to make small talk with almost everyone. I also have the odd habit of walking around on my toes. People ask me if I want to be a ballerina. I say no, because I don’t.
1970—I learn about the condition called autism. I wonder if I might have something related.
1977—I look up autism at the Cleveland State University library, where I am an engineering student. I learn of the studies on DMG and vitamin B6 conducted by Bernard Rimland. I try DMG, it doesn’t seem to help me.
1978—I meet my future husband. I tell him I think I have something like autism. He tells me I’m just quiet and that is fine with him.
1989—Our first child, Erin, is born. (after I receive a Rhogam shot, as I am Rh negative) She screams like someone stuck a fork into her from day one, every single waking moment that she isn’t eating. When she is nursing, she writhes, squirms, screams in between swallows. Doctor tells me she is just colic, it happens sometimes. (The doctor and I have to shout at the top of our lungs at each other when we converse, in order to be heard over the screaming of my daughter.)
1992—Erin’s preschool teachers tell us that she “has problems we don’t feel that we are qualified to deal with.” She is completely withdrawn in school. Will play endlessly with one toy, but not at all with other children. Has various other symptoms of autism, but no one has yet called it that. She sees a gastro intestinal specialist because she is withholding her bowel movements, sometimes for as long as ten days at a stretch. It is he who first suggests to us that she might have autism. It isn’t something any of us wanted to hear although I had my suspicions. I am horrified, but relieved to learn that subsequent evaluations leave her undiagnosed with any autism spectrum disorder.
I speak with Bernard Rimland, of Autism Research Institute. I tell him I’m interested in his studies, as I’ve got a daughter who it was suggested might have autism, and I myself have often felt I might have something related. He explains to me that they have heard from a great many parents of children diagnosed with autism who feel that they themselves have something similar. (as with the parents of children diagnosed with ADD and ADHD). I ask him why, if vitamin B6 is supposed to be so beneficial, the traditional medical establishment doesn’t recommend it. He tells me that he doesn’t know. He tells me that it almost seems to him, at times, as though they don’t want the cause of autism to be found. I ask him who ‘they’ are, and he tells me that there are a lot of researchers getting government money, and that it’s these people he is talking about. He says nothing to me about vaccines. I’m left wondering what is meant by his mysterious statements. It’s not until years later that I find out.
I begin taking large doses of vitamin B6. It seems to help me quite a bit.
2000—Erin is mainstreamed in school, where she is doing well. She was in the gifted program for a short time (in about the third or fourth grade), but taken out of it at her request. She does have problems with being harassed a great deal by her classmates. She is told, by the HMO mental health professional, to ignore them and they will stop harassing her. She does ignore them, but they don’t stop harassing her.
2003—Erin is doing a report for her science class on Porphyria. She gets sidetracked while doing her research on this topic and she comes to me one day and she says to me “mom, I think I have lead poisoning.” I say to her “no dear I don’t think so. We can have you tested but we don’t have any lead pipes or old paint, and that’s how people usually get it I believe.” She pauses for a moment, and then she says to me “well then, I think I might have mercury poisoning.” I, having heard nothing at this point in time about concerns about mercury in vaccines, brush off this concern of hers, as well.
2004—I learn about, and read, Evidence of Harm. I realize that the complaints Erin has seen the doctor for over the years are all symptoms of mercury poisoning. The skin rashes. The fatigue. The obsessive compulsive behavior. The menstrual irregularities. The social withdrawal.
2005—I begin speaking about thimerosal, the mercury preservative used in vaccines, on the internet chat rooms that I had frequented for many years. I’d gotten to know the regulars and the moderators on Undernet political chat rooms, both left and right leaning. I’d lurked a lot over the years but also joined in on many debates. I had always gotten along amicably with everyone there, until one day when I said the words ‘thimerosal’ and ‘autism’. Suddenly I found myself ridiculed, then kicked, then banned for longer and long periods of time. No matter how polite I was, no matter how objective, no matter how much I tried not to speak of it unless someone else brought the topic up because I knew it was a hard thing for other people to want to face up to (the possibility that the medical authorities and the government authorities poisoned children), I was banned for increasingly longer periods of time.
Spring 2007—I contact a local autism organization. I tell the local chapter president I have concerns about mercury in vaccines, and that I am interested in volunteering to help the organization. It is not Autism Speaks that I contact, because I already am aware of the position that their organization takes, publicly, regarding the cause of autism. (“the only thing parents of children with autism do is they have bad genes”.—Allison Singer, of Autism Speaks) I meet the leader, Marian, of a local ASD parent support group, called AutismNE, who is interested in biomedical and dietary intervention.
April 2007—I show up one evening outside of the House of Blues in downtown Cleveland. There is to be an Autism Speaks sponsored benefit there, and I want to hand out my flyer
http://www.wideopenwest.com/~r_nemeth/vaccine_flyer.htm
which has information about thimerosal that I feel is important for parents of children with autism to be aware of. I am told by the organizers of the event, inside of the House of Blues lobby, that they would be happy to leave my flyers on their information table. I tell them that I would prefer to hand them out individually to people on the sidewalk who are coming into the venue. I am told by the organizers of the event that I will have to leave. I refuse, as I can’t understand what it is that I am doing that ought to bother anyone, (I would approach people, wearing my ‘Autism—It’s no Mystery, it’s Mercury’ tee-shirt, and I would ask them “would you like some information about vaccine safety?” and if they said “yes” I would give them my flyer and if they said “no” I would let them pass), and they tell me I will be arrested if I don’t leave. A police car and two police officers are called out, and they tell me that I will be arrested if I don’t leave. I refuse to leave, and the police chief is called out. He tells me that I am within my rights to stay and hand out information so long as I don’t obstruct anyone. He lets me stay, as I never was threatening or obstructing anyone. Someone with Autism Speaks says to me “do you have a child with autism? Do you know what it’s like to have a child with autism? Can you understand? We’ve worked very hard for this event, and you’re spoiling our evening. Can you understand that?” I tell her no, I can’t understand why what I am doing is spoiling her evening, and I stay to hand out information.
Summer 2007—I see a post on the local parent support newsgroup from Shari Goldberg, local chapter president of Autism Speaks, soliciting for some Autism Speaks sponsored event. I write a post explaining to the newsgroup what happened to me on the night of April 21, outside of the House of Blues. I try to post this to the forum but cannot. I speak with the moderator, Marian, and I am told that sometimes there is a ‘glitch’. She agrees to forward my post to the forum, as I don’t seem able, for some reason, to post it.
A day or two later, Shari Goldberg, of Autism Speaks, denies publicly on the AutismNE forum that anyone tried to have me arrested outside of the House of Blues benefit concert.
October 2007—I bring up the topic of the House of Blues arrest attempt, again, on the newsgroup. I’ve just witnessed Autism Speaks raise half a million dollars, from thousands of ill-informed walkers at their September walkathon—money which I know will be used not to find the cause of autism, but to further try to convince people that the problem is strictly genetic in origin, and to try to silence anyone who might suggest otherwise. Ms. Goldberg again publicly denies that any arrest attempt was ever made.
I obtain, from the Cleveland police department, the incident report that they have on file for that evening. I try to post on AutismNE a url for a site where I’ve uploaded scans of these documents,
http://www.wideopenwest.com/~r_nemeth/HOB_incident_report.htm
because I feel that since Ms. Goldberg is lying to me and about me publicly there on the forum, it isn’t unreasonable for me to expect that I would be able to make some attempt to clear my name, publicly, on that forum. There is another ‘glitch’ and my post does not show up on the forum. This time, when I speak to Marian on the phone, I am told that she will not post what I have to say. She feels that I should ‘work with her’ to find something that is more acceptable to Ms. Goldberg, something that she could post on her newsgroup. She also thinks that the things that I have to say are not positive enough, and that I should only post positive things. She suggests that I limit my posts to descriptions of things that I’ve done that have helped my children, and not post anything ‘disturbing’, as the parents of children with autism are already stressed out enough as it is.
In short, I find that the censorship that I experienced on the internet, by anonymous individuals, continues in real life. This time, however, I’m aware of who the people are who feel the need for the censorship, and I can make others aware of who they are. They are no longer anonymous, nameless and faceless individuals on the internet.
Now—I’m continuing to disseminate information about thimerosal in vaccines and autism, and particularly thimerosal in flu vaccines (which is still present there in toxic amounts). I also intend to attend monthly ASGC meetings (Autism Society of Greater Cleveland. I feel comfortable enough with their organization as they are linked from the Generation Rescue website, and I’ve never seen any objectionable, offensive public statements regarding the cause of autism from them), in order to learn more about autism, and about what I might do to help my own children (as I believe that three of the four are affected in some way by what I prefer to call mercury poisoning) as well as others diagnosed with autism.
What I would really like is to see the vast sums of money that are raked in by Autism Speaks, and then given as grants to scientists who haven’t been able to help a single child by looking for the elusive ‘autism gene’, put instead toward helping families get the treatment for their children that they feel is the most beneficial, whether it be ABA or hyperbaric oxygen or chelation or diet and nutrition advice. I also think it is very important that state laws which govern insurance coverage are changed so that parents who are now denied the help they want and need for their children will no longer be denied coverage for their autistic child.
1967—I realize there is something wrong with me. I’m about eight years old. While I can communicate fine when I need to, I am pretty much unable to make small talk with almost everyone. I also have the odd habit of walking around on my toes. People ask me if I want to be a ballerina. I say no, because I don’t.
1970—I learn about the condition called autism. I wonder if I might have something related.
1977—I look up autism at the Cleveland State University library, where I am an engineering student. I learn of the studies on DMG and vitamin B6 conducted by Bernard Rimland. I try DMG, it doesn’t seem to help me.
1978—I meet my future husband. I tell him I think I have something like autism. He tells me I’m just quiet and that is fine with him.
1989—Our first child, Erin, is born. (after I receive a Rhogam shot, as I am Rh negative) She screams like someone stuck a fork into her from day one, every single waking moment that she isn’t eating. When she is nursing, she writhes, squirms, screams in between swallows. Doctor tells me she is just colic, it happens sometimes. (The doctor and I have to shout at the top of our lungs at each other when we converse, in order to be heard over the screaming of my daughter.)
1992—Erin’s preschool teachers tell us that she “has problems we don’t feel that we are qualified to deal with.” She is completely withdrawn in school. Will play endlessly with one toy, but not at all with other children. Has various other symptoms of autism, but no one has yet called it that. She sees a gastro intestinal specialist because she is withholding her bowel movements, sometimes for as long as ten days at a stretch. It is he who first suggests to us that she might have autism. It isn’t something any of us wanted to hear although I had my suspicions. I am horrified, but relieved to learn that subsequent evaluations leave her undiagnosed with any autism spectrum disorder.
I speak with Bernard Rimland, of Autism Research Institute. I tell him I’m interested in his studies, as I’ve got a daughter who it was suggested might have autism, and I myself have often felt I might have something related. He explains to me that they have heard from a great many parents of children diagnosed with autism who feel that they themselves have something similar. (as with the parents of children diagnosed with ADD and ADHD). I ask him why, if vitamin B6 is supposed to be so beneficial, the traditional medical establishment doesn’t recommend it. He tells me that he doesn’t know. He tells me that it almost seems to him, at times, as though they don’t want the cause of autism to be found. I ask him who ‘they’ are, and he tells me that there are a lot of researchers getting government money, and that it’s these people he is talking about. He says nothing to me about vaccines. I’m left wondering what is meant by his mysterious statements. It’s not until years later that I find out.
I begin taking large doses of vitamin B6. It seems to help me quite a bit.
2000—Erin is mainstreamed in school, where she is doing well. She was in the gifted program for a short time (in about the third or fourth grade), but taken out of it at her request. She does have problems with being harassed a great deal by her classmates. She is told, by the HMO mental health professional, to ignore them and they will stop harassing her. She does ignore them, but they don’t stop harassing her.
2003—Erin is doing a report for her science class on Porphyria. She gets sidetracked while doing her research on this topic and she comes to me one day and she says to me “mom, I think I have lead poisoning.” I say to her “no dear I don’t think so. We can have you tested but we don’t have any lead pipes or old paint, and that’s how people usually get it I believe.” She pauses for a moment, and then she says to me “well then, I think I might have mercury poisoning.” I, having heard nothing at this point in time about concerns about mercury in vaccines, brush off this concern of hers, as well.
2004—I learn about, and read, Evidence of Harm. I realize that the complaints Erin has seen the doctor for over the years are all symptoms of mercury poisoning. The skin rashes. The fatigue. The obsessive compulsive behavior. The menstrual irregularities. The social withdrawal.
2005—I begin speaking about thimerosal, the mercury preservative used in vaccines, on the internet chat rooms that I had frequented for many years. I’d gotten to know the regulars and the moderators on Undernet political chat rooms, both left and right leaning. I’d lurked a lot over the years but also joined in on many debates. I had always gotten along amicably with everyone there, until one day when I said the words ‘thimerosal’ and ‘autism’. Suddenly I found myself ridiculed, then kicked, then banned for longer and long periods of time. No matter how polite I was, no matter how objective, no matter how much I tried not to speak of it unless someone else brought the topic up because I knew it was a hard thing for other people to want to face up to (the possibility that the medical authorities and the government authorities poisoned children), I was banned for increasingly longer periods of time.
Spring 2007—I contact a local autism organization. I tell the local chapter president I have concerns about mercury in vaccines, and that I am interested in volunteering to help the organization. It is not Autism Speaks that I contact, because I already am aware of the position that their organization takes, publicly, regarding the cause of autism. (“the only thing parents of children with autism do is they have bad genes”.—Allison Singer, of Autism Speaks) I meet the leader, Marian, of a local ASD parent support group, called AutismNE, who is interested in biomedical and dietary intervention.
April 2007—I show up one evening outside of the House of Blues in downtown Cleveland. There is to be an Autism Speaks sponsored benefit there, and I want to hand out my flyer
http://www.wideopenwest.com/~r_nemeth/vaccine_flyer.htm
which has information about thimerosal that I feel is important for parents of children with autism to be aware of. I am told by the organizers of the event, inside of the House of Blues lobby, that they would be happy to leave my flyers on their information table. I tell them that I would prefer to hand them out individually to people on the sidewalk who are coming into the venue. I am told by the organizers of the event that I will have to leave. I refuse, as I can’t understand what it is that I am doing that ought to bother anyone, (I would approach people, wearing my ‘Autism—It’s no Mystery, it’s Mercury’ tee-shirt, and I would ask them “would you like some information about vaccine safety?” and if they said “yes” I would give them my flyer and if they said “no” I would let them pass), and they tell me I will be arrested if I don’t leave. A police car and two police officers are called out, and they tell me that I will be arrested if I don’t leave. I refuse to leave, and the police chief is called out. He tells me that I am within my rights to stay and hand out information so long as I don’t obstruct anyone. He lets me stay, as I never was threatening or obstructing anyone. Someone with Autism Speaks says to me “do you have a child with autism? Do you know what it’s like to have a child with autism? Can you understand? We’ve worked very hard for this event, and you’re spoiling our evening. Can you understand that?” I tell her no, I can’t understand why what I am doing is spoiling her evening, and I stay to hand out information.
Summer 2007—I see a post on the local parent support newsgroup from Shari Goldberg, local chapter president of Autism Speaks, soliciting for some Autism Speaks sponsored event. I write a post explaining to the newsgroup what happened to me on the night of April 21, outside of the House of Blues. I try to post this to the forum but cannot. I speak with the moderator, Marian, and I am told that sometimes there is a ‘glitch’. She agrees to forward my post to the forum, as I don’t seem able, for some reason, to post it.
A day or two later, Shari Goldberg, of Autism Speaks, denies publicly on the AutismNE forum that anyone tried to have me arrested outside of the House of Blues benefit concert.
October 2007—I bring up the topic of the House of Blues arrest attempt, again, on the newsgroup. I’ve just witnessed Autism Speaks raise half a million dollars, from thousands of ill-informed walkers at their September walkathon—money which I know will be used not to find the cause of autism, but to further try to convince people that the problem is strictly genetic in origin, and to try to silence anyone who might suggest otherwise. Ms. Goldberg again publicly denies that any arrest attempt was ever made.
I obtain, from the Cleveland police department, the incident report that they have on file for that evening. I try to post on AutismNE a url for a site where I’ve uploaded scans of these documents,
http://www.wideopenwest.com/~r_nemeth/HOB_incident_report.htm
because I feel that since Ms. Goldberg is lying to me and about me publicly there on the forum, it isn’t unreasonable for me to expect that I would be able to make some attempt to clear my name, publicly, on that forum. There is another ‘glitch’ and my post does not show up on the forum. This time, when I speak to Marian on the phone, I am told that she will not post what I have to say. She feels that I should ‘work with her’ to find something that is more acceptable to Ms. Goldberg, something that she could post on her newsgroup. She also thinks that the things that I have to say are not positive enough, and that I should only post positive things. She suggests that I limit my posts to descriptions of things that I’ve done that have helped my children, and not post anything ‘disturbing’, as the parents of children with autism are already stressed out enough as it is.
In short, I find that the censorship that I experienced on the internet, by anonymous individuals, continues in real life. This time, however, I’m aware of who the people are who feel the need for the censorship, and I can make others aware of who they are. They are no longer anonymous, nameless and faceless individuals on the internet.
Now—I’m continuing to disseminate information about thimerosal in vaccines and autism, and particularly thimerosal in flu vaccines (which is still present there in toxic amounts). I also intend to attend monthly ASGC meetings (Autism Society of Greater Cleveland. I feel comfortable enough with their organization as they are linked from the Generation Rescue website, and I’ve never seen any objectionable, offensive public statements regarding the cause of autism from them), in order to learn more about autism, and about what I might do to help my own children (as I believe that three of the four are affected in some way by what I prefer to call mercury poisoning) as well as others diagnosed with autism.
What I would really like is to see the vast sums of money that are raked in by Autism Speaks, and then given as grants to scientists who haven’t been able to help a single child by looking for the elusive ‘autism gene’, put instead toward helping families get the treatment for their children that they feel is the most beneficial, whether it be ABA or hyperbaric oxygen or chelation or diet and nutrition advice. I also think it is very important that state laws which govern insurance coverage are changed so that parents who are now denied the help they want and need for their children will no longer be denied coverage for their autistic child.
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