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Julie Leonardo
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Eli-jay, my advice would be to NOT ever set foot in that practice again. And a week or two later is not sufficient time in my opinion for your child to recover. You dont have to have ANY shot right now. At this point, just take a break from vaccinating and do some more research. Go to vaxtruth.org or nvic.org and bone up on vaccines and your rights. In the meantime, if you can go to another local practice, maybe a family practice, natural minded practice or D.O., you may have better luck avoiding vaccines. That way, you can get medical care without the pressure. Maybe someone else can chime in on what to do legally about the doctor's lie. As for your kids, I highly recommend going to tacanow.org (autism), wellnessmama.com or westonaprice.org in order to get information on how to heal your child and boost the immune system. I am so sorry you experienced this. My thoughts and prayers are with you!
There's a doctor by the name of Charles Dumont who is at the Raby Institute. His specialty is GI
Yes, Julie, and yes, Sarah! I agree with both of you. And I get so angry when even others who are close to my daughter say things like, "She is happy, though, a content child." And I just want to scream that she may seem happy because she is trapped in her own world. Yes, she is happier than most Autie kids, but she was already fighting for a "normal" life with her Down Syndrome. And then to add Autism on top of that just makes me so angry! Our kids are just treated like throwaways. They're just "retarded" anyway, right? Why bother?! Ugh! OK, I'll shut up now. I just get so angry.
Toggle Commented Sep 22, 2012 on She’ll Have a Good Life at AGE OF AUTISM
LJ, you would have handed him his butt on a plate, lol! As far as having more knowledge than the docs, this is so true. The physician who last saw my child had been under the impression that kids with Down Syndrome had immune system issues because of the physical differences.....that he was unaware of any studies showing biochemistry issues. I was just flabbergasted! THAT right there is why kids with DS end up succombing to autism (18.2%,) because of the biochemistry! And they target our kids for all of the vaccines plus some extras supposedly to help them immune system wise. What a joke! They shouldn't go anywhere near a kid with DS if they don't even understand what an extra chromosome does!
The others who mentioned that forgiveness is something we decide to do for ourselves to clean out the anger and bitterness, so the onus is on us, not on the offender. Having said that, I was just thinking this morning about how much damage has been done to my daughter. She was already cognitively delayed because of the Down Syndrome. How much of this delay is part of vaccine injury too? This thought opened a new bag of sadness that I didn't know I had. It's like the acceptance is there, then something happens and it starts all over again. Have I forgiven? No, not yet. I need to, but it's so hard. I will have to decide to do that at some point.......
Toggle Commented Sep 17, 2012 on Forgive and Forget? at AGE OF AUTISM
I hope this Paul S. is not a person I know (it could be)....if so, gonna have to give the smackdown. Anyway, I agree with Annd Dachel. It's inflammation, it's an immune system that is messed up, and it's also pathogenic in nature. All combined to make one heap of a mess in a child's body.
I would love a copy of this book. I bought one a while ago to give to a friend with a daughter with aspergers, but I would love to have one on hand to loan out to others:)
@Lurker, you need to understand something since you are so "into" needing services. The services people like you need are for higher functioning people. My child and many others like her have Down Syndrome and Autism. Not one child I know with the dual diagnosis is high functioning. At least with just DS, there is a good chance for school, for friends, for jobs, etc. For kids with the dual dx, it is almost guaranteed that it won't be the case. So while you may need some help, kids like mine (and the estimates are now anywhere from 18.2% to as much as 22% of the Down Syndrome population) will need MUCH, MUCH more. And it will be devastating if the rates increase in our population (and it is.)
Not that I necessarily believe them, but they make a comment in this page about the 76% number being the amount of offices, not the amount of vaccines: " Contrary to some news reports, the OIG did not find that 76% of all vaccine was stored improperly" http://www.cdc.gov/media/releases/2012/s0607_children_vaccine.html Having said that, I can't say that I believe them, lol!
Toggle Commented Jul 5, 2012 on The Truth About Vaccine Safety at AGE OF AUTISM
Aaaack! Have you been peeking in my house lately? I do the same thing, and it's not good. Thank you for taking me to task (even though you weren't talking directly to me!) Spot on for a lot of us, I think.
Toggle Commented Jun 3, 2012 on Self Discovery at AGE OF AUTISM
Wait, but shouldn't she be made to only look out of the corners of her eyes? They should also have realistic poop that pops out of her diaper, which she then automatically smears wherever she is. oh yeah, and then she touches her face and hair with it. And if she's like my kid, she can be like the old baby dolls with a hole in her mouth for a bottle even though she's much older. If this is successful, we can then do a dual diagnosis Barbie complete with Down Syndrome and Autism. So she not only looks like the Autism Barbie, but she also can come complete with orthotics and shorter limbs just to make it all interesting.....sigh!
Toggle Commented May 2, 2012 on Autism Barbie - She Rocks! at AGE OF AUTISM
I don't believe for a second that my child has ruined my life. However I do get in that dark place often, especially since my one source of respite has not been able to help me. That is the one thing that helps to lift my life up. I have two special needs kids, and one doesn't sleep long enough. I have to choose between an hour of "me time" or one more hour of sleep to have an official night's sleep. That's the only free time I have, and I don't have any time for a hobby. I'm just too exhausted for that even if I did. Not to bitch about it, but this is the part that separates having a life from an existence. I think the difference lies in how much help you can have. Having said all of this, I still try to lift myself up during the day and also try to see the positive in life. It's just hard right now to do so. But I will never give up. God put me here for a reason, and He wants me to heal my kids. So I have a job to do......I just keep praying for the right attitude and the rest and rejeuvenation that I need to cope with the day to day.
Those of us with kiddos with the dual diagnosis of Down Syndrome and autism may be getting even scarier news. The 1999 estimate was anywhere from 5-10% of our DS population. Then I heard 18.2% last year at Autism One with Laurette Janak. Now a friend of mine has a child who is taking part in a study with a researcher studying Autism and Down Syndrome. Her estimate (and I want to see the hard data) is something to the effect of 33%!!!!! Almost one third of children with Down Syndrome also have Autism if she is correct. And our population tends to be lower functioning. Do you know what kind of supports OUR kids will need?!?! This is INSANE! And one of the big problems is that the DS community is behind in terms of the most recent treatments (and the lack of desire to support biomedical treatments) and the experts don't want to "put another label on these kids" like it's something unnecessary and too troubling for us. So the numbers of affected kids is astronomical and nobody wants to give the diagnosis that could get the needed extra treatments and funding through insurance. It is a crime and very discriminatory. With the right help, kids with DS can do so much, but it's like our kids with the dual dx are a hopeless cause, so why bother:(
I don't see this as a republican vs. democrat issue. I cannot speak to Keynesian philosophy. However I can say that government and pharma are in bed with each other. Each side is contributing to the problem and nobody is listening to the people anymore. That was my takeaway from all of this.
Toggle Commented Mar 3, 2012 on A Keynesian Look at Autism at AGE OF AUTISM
Benedetta, it was the same man the author of this piece is talking about: Alan Zarembo. What a yutz!
I emailed them with this letter: Subject: Regarding your Series on Autism Hello, I have briefly scanned the first part of your series: Discovering Autism Epidemic of Disease or Discovery? I have to admit that I am a bit disheartened from what I have read. It appears to me that the basic consensus of the article so far is that the increase in Autism is just a factor over better and earlier diagnosis, coupled with a more lax diagnostic criteria. I have to tell you that as a mother of an autistic child (coupled with Down Syndrome,) I know hundreds of mothers of autistic children. Many of them, if not most, fought to get any diagnosis, though it was evident that their children fit the criteria. I have a second child myself who has ASD characteristics, but none of the experts would diagnose her as autistic. So it is pretty insulting to insinuate that parents and schools are just diagnosing children willy nilly in order to get benefits. I DO know moms who have autistic children who refuse to get diagnoses, on the other hand, so that their kids don't get labelled and singled out. That DOES happen, and frequently. As far as the genetic theory of autism, there may be a genetic susceptibility just like you can have a genetic susceptibility to alzheimers or heart disease, but that doesn't mean you will get it, especially if you live a lifestyle and avoid the things that could trigger it. But Autism is NOT genetic like Down Syndrome is. THAT is a true case of genetic. But even that is caused by something not working right in the body, which causes the chromosomes to stick together in the process. There is actually only one form of genetic DS (translocation), and that is not the majority of cases. So even something Genetic is not genetically transmittable. Something in the environment either prenatally ("born with it") or postnatally (regressive autism) is happening. Even the government admitted this in the following link: http://epw.senate.gov/public/index.cfm?FuseAction=Hearings.Hearing&Hearing_ID=1ab3cf42-802a-23ad-4a3a-686da83bf6d0 People from all over the place, families, special ed teachers who have been in the field for decades (I have personally spoken with a few myself,) heck, even Dr. Oz (!) are admitting that there is an epidemic of Autism. It is real, and it is increasing. Just take a look around at the senior centers of the world and see how many elderly autistic there are. There aren't many. There should be if the numbers have not changed. The current estimate of autistic teens about ready to leave the school system is about 1 million, so it should be easy to find a similar number of autistic elderly, yes? But where are they? Do a search of nursing homes and get those people diagnosed. I will bet you any money that there won't be nearly the number of people. The fact is, the people working with our kids, scientists, doctors, therapists all know that our children are being poisoned by our environment. Which chemicals? All of them, interacting with each other and synergistically damaging their neurological systems. Autism is an umbrella term to describe behaviors and symptoms, not a real disorder. Autism is Lyme disease, mitochondrial disorder, food allergies, PANDAS, Cerebral Folate Deficiency, and other disorders. It's many illnesses on top of each other and not a psychological disorder. Any parent could tell you that. We don't need all of the eye gazing and genetic studies. All of the genetic studies won't do any good in helping the children of today or even the next couple of generations. Down Syndrome can teach you that. All that happens with genetic information is the ability to test for it earlier so you can abort. DS is a prime example of the. the estimate is that 92-95% of positively prenatally diagnosed fetuses are aborted. New testing has just come out that can be done in the first 10 weeks, and it's very accurate. So how many more will be aborted? You see, there is no cure when the genes are found. Only testing available to terminate pregnancies. We need stories like this to go by the wayside in order to get help for our kids. As long as the increase in Autism is buried and attributed to numbers, then Autism hasn't changed and nobody has to hurry to find help for our kids. That's the sad outcome of all of this. The reality that may have to hit home is that those 1 million that are leaving the school system have no support outside of school. And the low estimate for care for them is $3 million A PERSON. That's the low estimate. And who is going to pay for them? They are going to bankrupt the country at this rate. So you see, it is in your best interest to get this issue on the top of the list of priorities for our scientists. Enough genetic studies! Let's get real research done, chemicals, pathogenic studies, nutritional studies, new therapeutic techniques. That's what we need, not genetics and eye gazing. That's a waste of your precious tax dollars and mine. Do you want to caregive for my now 7 year old in diapers who won't let me dig the feces out of under her fingernails? There are about 10-18% of those with autism who have DS and Autism out there, and they are on the lower end of the function spectrum. So you see, you should be doing a report on this. And not to urge testing in order to abort, but to get real help. And the best thing of all is this. Once you do a story on this and get the right information out, a lot of these things that we know to work also will have a positive affect on juevenile diabetes, asthma, allergies, and other illnesses of the immune system. They're all connected. But that's another letter for another day. So be a hero, and please, please get out the truth. Stand up for us and don't be a tool of those who don't care. Sincerely, Julie Leonardo And this is the crap he sent back: Thanks for your thoughtful email. There’s no denying that autism still carries a stigma and that some parents remain in denial. But overall, the trend has been in the opposite direction: The stigma has eased and the definition of autism has expanded as have the efforts to identify it, and the diagnosis has gone from being one of last resort to one that many parents will fight for to help their children (as your email acknowledges). We’re not ruling out the possibility of a real increase in incidence; the efforts to find environmental causes are still very worthwhile. But the evidence is quite clear that these social factors can explain a significant part of the growth. As a newspaper, that is what we were able to focus on. When the scientists figure out the causes, we’ll report on that on the front page too. Best, Alan
I just sent another letter myself and made sure it went to everyone on the list: Hello, I have briefly scanned the first part of your series: Discovering Autism Epidemic of Disease or Discovery? I have to admit that I am a bit disheartened from what I have read. It appears to me that the basic consensus of the article so far is that the increase in Autism is just a factor over better and earlier diagnosis, coupled with a more lax diagnostic criteria. I have to tell you that as a mother of an autistic child (coupled with Down Syndrome,) I know hundreds of mothers of autistic children. Many of them, if not most, fought to get any diagnosis, though it was evident that their children fit the criteria. I have a second child myself who has ASD characteristics, but none of the experts would diagnose her as autistic. So it is pretty insulting to insinuate that parents and schools are just diagnosing children willy nilly in order to get benefits. I DO know moms who have autistic children who refuse to get diagnoses, on the other hand, so that their kids don't get labelled and singled out. That DOES happen, and frequently. As far as the genetic theory of autism, there may be a genetic susceptibility just like you can have a genetic susceptibility to alzheimers or heart disease, but that doesn't mean you will get it, especially if you live a lifestyle and avoid the things that could trigger it. But Autism is NOT genetic like Down Syndrome is. THAT is a true case of genetic. But even that is caused by something not working right in the body, which causes the chromosomes to stick together in the process. There is actually only one form of genetic DS (translocation), and that is not the majority of cases. So even something Genetic is not genetically transmittable. Something in the environment either prenatally ("born with it") or postnatally (regressive autism) is happening. Even the government admitted this in the following link: http://epw.senate.gov/public/index.cfm?FuseAction=Hearings.Hearing&Hearing_ID=1ab3cf42-802a-23ad-4a3a-686da83bf6d0 People from all over the place, families, special ed teachers who have been in the field for decades (I have personally spoken with a few myself,) heck, even Dr. Oz (!) are admitting that there is an epidemic of Autism. It is real, and it is increasing. Just take a look around at the senior centers of the world and see how many elderly autistic there are. There aren't many. There should be if the numbers have not changed. The current estimate of autistic teens about ready to leave the school system is about 1 million, so it should be easy to find a similar number of autistic elderly, yes? But where are they? Do a search of nursing homes and get those people diagnosed. I will bet you any money that there won't be nearly the number of people. The fact is, the people working with our kids, scientists, doctors, therapists all know that our children are being poisoned by our environment. Which chemicals? All of them, interacting with each other and synergistically damaging their neurological systems. Autism is an umbrella term to describe behaviors and symptoms, not a real disorder. Autism is Lyme disease, mitochondrial disorder, food allergies, PANDAS, Cerebral Folate Deficiency, and other disorders. It's many illnesses on top of each other and not a psychological disorder. Any parent could tell you that. We don't need all of the eye gazing and genetic studies. All of the genetic studies won't do any good in helping the children of today or even the next couple of generations. Down Syndrome can teach you that. All that happens with genetic information is the ability to test for it earlier so you can abort. DS is a prime example of the. the estimate is that 92-95% of positively prenatally diagnosed fetuses are aborted. New testing has just come out that can be done in the first 10 weeks, and it's very accurate. So how many more will be aborted? You see, there is no cure when the genes are found. Only testing available to terminate pregnancies. We need stories like this to go by the wayside in order to get help for our kids. As long as the increase in Autism is buried and attributed to numbers, then Autism hasn't changed and nobody has to hurry to find help for our kids. That's the sad outcome of all of this. The reality that may have to hit home is that those 1 million that are leaving the school system have no support outside of school. And the low estimate for care for them is $3 million A PERSON. That's the low estimate. And who is going to pay for them? They are going to bankrupt the country at this rate. So you see, it is in your best interest to get this issue on the top of the list of priorities for our scientists. Enough genetic studies! Let's get real research done, chemicals, pathogenic studies, nutritional studies, new therapeutic techniques. That's what we need, not genetics and eye gazing. That's a waste of your precious tax dollars and mine. Do you want to caregive for my now 7 year old in diapers who won't let me dig the feces out of under her fingernails? There are about 10-18% of those with autism who have DS and Autism out there, and they are on the lower end of the function spectrum. So you see, you should be doing a report on this. And not to urge testing in order to abort, but to get real help. And the best thing of all is this. Once you do a story on this and get the right information out, a lot of these things that we know to work also will have a positive affect on jeuvenile diabetes, asthma, allergies, and other illnesses of the immune system. They're all connected. But that's another letter for another day. So be a hero, and please, please get out the truth. Stand up for us and don't be a tool of those who don't care. Sincerely, Julie Leonardo
I sent an email to the authors and got a response, believe it or not, from Paula: Hello We appreciate you taking the time to comment on our article. Our qualitative study was a small study examining the issues that caregivers face while caring for a child with autism, and was NOT solely about benefits accrued. During the one-on-one interviews women were asked to discuss their experiences and to provide positives and negatives associated with their experiences. The article that you are commenting about is obviously relaying the information on the positive aspects these mothers reported while caring for their children. This is certainly not to say that there were no negatives ... because there certainly were. These findings are being published in a second article entitled The Costs of Caring for a Child with an Autism Spectrum Disorder in Issues in Comprehensive Pediatric Nursing. It is also important to note that this study is a part of a larger study that examined the motor capabilities of children with autism spectrum disorder. The majority of the children were considered high functioning along the autism spectrum disorder continuum, and the majority of the mothers interviewed were taken from this larger study. However, a few of the children were not classified as high functioning, and mothers expressed having many difficulties with their children (e.g., troubles toileting, speech difficulties, difficulties in social environments, other behavioural issues, etc...). These negative experiences do appear in the costs article (in press) but these women did in fact describe benefits, whether or not they represent all women in similar circumstances. One of the benefits of qualitative research is obtaining the voice of each individual interviewee. Qualitative research is NOT meant to be generalized to all individuals faced with similar circumstances. The findings from the study published convey the information from the 8 women interviewed and is certainly not intended to be representative of all mothers of children with autism. I am not sure if you read the article in its entirety or just the abstract, but do feel that you would see that there is more to the issue than just the positives if the article had been read in it entirety. This phenomena of reaping costs and benefits while caring for a child with an illness, whether life threatening or not, is not confined to children with autism. There is a significant body of literature (pediatric cancer for example) to support this. I, along with another of my collegues, also complete research in the area of mothers caring for children with cancer. We have substantiated the same findings as we did with the mothers of children with autism. I became involved in the area of mothers caring for children with illnesses because of a personal experience. My brother was diagnosed with neuroblastoma (type of cancer) at two years of age and passed away around his third birthday. Undoubtedly my family's life was in turmoil caring for my palliative brother who had lost his eyes in his final stages and had to have every need attended to by my parents, who choose to care for him within our home. Our family, not just my brother, dealt with his cancer on a daily basis. At the end of day, all members of my family, including my parents would say that despite all of the negatives associated with my brother's cancer and his death, was a silver lining. In no way would we have wanted to be robbed the opportunity to share in his life, no matter how brief. I am not trying to insinuate that having a child with cancer is similar to having a child with autism, only trying to demonstrate that many people are able to find glimmers of hope in situations that are difficult. I apologize if this article has offended you in any way. This article is not meant to diminish your experience or other parents in similar situations. At the same time, to not publish the findings from this study would deny the voices of the mothers of children with autism that did feel this way. All mothers with a child with an illness experience different journeys, and they may not all mirror each other. Paula _______________________________ Paula C. Fletcher, PhD Professor & Graduate Co-ordinator Department of Kinesiology and Physical Education Wilfrid Laurier University Waterloo, Ontario N2L 3C5
Yeah, it's so frustrating. I would love to just walk in there and say, we know what the issues are with autism. Mainly vaccines after a previous generation of initial vaccine damage (our parents and ourselves) coupled with poisonous water, air, food and medicines. Overstimulated immune systems resulting from all of this causes autism. We could save so much money since we know what the causes are and where the problem is. But that would mean changing an entire culture and system and nobody wants to do that. Laziness and greed.
Toggle Commented Dec 4, 2011 on No One Knows at AGE OF AUTISM
This guy obviously doesn't realize that there is a whole other group of kids out there with Autism that also have Down Syndrome. So not only do you have the Autistic issues, you have the cognitive delays as well with even greater hypotonia. Oh and also, Alzheimers. So there will be people out there who can't dress themselves, think on a higher level and with Alzheimers (at like age 40) who have Autism. Boy is it gonna be ugly! We're talking anywhere from 10-18 % of the Down Syndrome community. And just to let you know how much uglier it is, that community tends to NOT do biomedical/nutritional intervention. A lot of parents with kids with DS view their kids as made that way, so they view it in a neurodiversity kind of thing. Now we don't treat our dually dx'd kid this way, so we do interventions ourselves. But we are facing an uphill battle as we have to treat both diagnoses. So when THIS group of kids reaches adulthood, what are they going to do? This ain't a higher functioning group in general, though with biomed, that could change.
I would love to try this, please enter us:)
Toggle Commented Nov 26, 2011 on AofA Contest From Lee Silsby at AGE OF AUTISM
Yes, the article was cut. I read it and sent a letter to the editor expressing my outrage at Catsoulis' review and the lack of compassion for our kids. Maybe other did the same and they pulled it?
I would love a copy of this book! I have a non verbal child, and I need to get a look inside of her to see how she must be feeling and thinking!
I remember bringing my daughter home with Down Syndrome and having people try to encourage me with visions of my daughter being able to dress herself and become a bagger at a grocery store. "oh they're so loving!" people would say, and I would get so mad. My daughter isn't here to make YOU feel good or to teach YOU something. She is here to live her own life and to make her own choices. I don't have a problem with her becoming a grocery store bagger if that makes her happy, but don't make that the ceiling for her. Nowadays since she's been dually diagnosed with Autism, I long for her to be able to bag groceries, but I still aim for higher. I am not even sure where I am going with this, but I want her to have all of life's options available to her. I don't want to long for the day when she can become a grocery store bagger anymore.....I want to feel like it is possible to recover her. And she has made lots of improvements. However it is still a long road from now, and I'm hoping that Autism hasn't buried the possibilities deep within her.
Toggle Commented Nov 1, 2011 on She'll Be a Good Worker at AGE OF AUTISM
Testing for XMRV is now going to be done through this lab: http://www.unevx.com/