haven't came across this yet....feel free to comment...do you know of a good video? Email it to me AReynolds.autism@google.com
Friday, October 5, 2007
Meeting
Tonight we had one of our meetings. I think we are all very anxious. We leave Sunday. I am so happy for all this coming together. I am really stressed out. I have dozens of emails I didn't get to today. Most emails I get, people tell me their story. I read every single one and I am touched with the amount of response we are getting...
Thursday, October 4, 2007
YouTube video of the day
I am going to do my best to post a youtube video everyday....feel free to comment...and if you have one you like---email me AReynolds.autism@gmail.com
Wednesday, October 3, 2007
Very excited
We leave this weekend for our first shoot. I'm very excited. I have been researching autism for about 5 months now. I am thrilled to see how one story has turned into a series with a team.
I have to tell you though, I am nervous. I want to do this right. I know this is bound to raise a lot of eyebrows. I have invested so much time. I have received hundreds of messages and emails of people telling me what they want out of this series. I am constantly talking to these people and reading study after study.
What it all comes down to, is this is a new way of investigative reporting. Having people involved in the process helps the accuracy and improves coverage of finding truth.---AR
I have to tell you though, I am nervous. I want to do this right. I know this is bound to raise a lot of eyebrows. I have invested so much time. I have received hundreds of messages and emails of people telling me what they want out of this series. I am constantly talking to these people and reading study after study.
What it all comes down to, is this is a new way of investigative reporting. Having people involved in the process helps the accuracy and improves coverage of finding truth.---AR
Story Idea-awareness of possible link
This posting was submitted from a mother who wanted to share her story. This item was emailed to this blog--
Here is what I have lived, so I know it to be true, not a guess, not a theory..... My son was fine until about age 2. His behaviors changed gradually as well as his loss of speech, gradual until there was nothing. As time passed, he was exhibiting behaviors that are routinely and classically autistic. I began trying to find someone who could help me figure out what was going on with him. We heard autism, then asperger's, then PDD-NOS and finally Apraxia. These well meaning doctors and therapists didn't really know, they were making an educated guess based on behaviors that he was exhibiting.
We spent a lot of time and money going to all of the recommended therapists to help him learn how to manage these behaviors in a more appropriate manor. We never saw much of an improvement, though. A teacher flippantly mentioned the vaccine/mercury connection. I had never ever heard of that before. I researched it thoroughly before deciding to have him tested, and then it was just to "rule it out" because he never had any kind of immediate adverse reactions.
To my surprise, tests came back showing that he was, indeed, full of mercury. By that time, he was almost fully vaccinated. That started us down the long road of medical treatments to repair the damage caused by mercury. The overload of mercury caused him to be unable to eliminate other environmental toxins, so he was storing lead and arsenic from the water, tin from canned vegetables, etc. It was a nightmare! We had to make so many life changes, cleaning products, food, pulling out carpet and replacing it with wood floors, etc. etc. Along with doctor's appointments, medical tests at the doctor's office and hospitals, dental problems associated with mercury toxicity, speech therapy, OT, PT, auditory integration.......the list goes on.
Final outcome after 4 1/2 years of this: He has lost almost all of his "autistic" behaviors with speech being the last hurdle to overcome. Mercury acts as a numbing agent and he couldn't feel where to place his tongue to make the correct sounds needed for speech production. From the age of 2 until 9 months ago (he is 8) he was completely non-verbal. He has been steadily progressing in this area since Oct. of last year, so we are hopeful. My point to all of this is, had it not been for that teachers' casual comment, my son would have never made this kind of progress with therapy and would always have been labeled and considered to be Autistic.
Jennifer Michelle
Here is what I have lived, so I know it to be true, not a guess, not a theory..... My son was fine until about age 2. His behaviors changed gradually as well as his loss of speech, gradual until there was nothing. As time passed, he was exhibiting behaviors that are routinely and classically autistic. I began trying to find someone who could help me figure out what was going on with him. We heard autism, then asperger's, then PDD-NOS and finally Apraxia. These well meaning doctors and therapists didn't really know, they were making an educated guess based on behaviors that he was exhibiting.
We spent a lot of time and money going to all of the recommended therapists to help him learn how to manage these behaviors in a more appropriate manor. We never saw much of an improvement, though. A teacher flippantly mentioned the vaccine/mercury connection. I had never ever heard of that before. I researched it thoroughly before deciding to have him tested, and then it was just to "rule it out" because he never had any kind of immediate adverse reactions.
To my surprise, tests came back showing that he was, indeed, full of mercury. By that time, he was almost fully vaccinated. That started us down the long road of medical treatments to repair the damage caused by mercury. The overload of mercury caused him to be unable to eliminate other environmental toxins, so he was storing lead and arsenic from the water, tin from canned vegetables, etc. It was a nightmare! We had to make so many life changes, cleaning products, food, pulling out carpet and replacing it with wood floors, etc. etc. Along with doctor's appointments, medical tests at the doctor's office and hospitals, dental problems associated with mercury toxicity, speech therapy, OT, PT, auditory integration.......the list goes on.
Final outcome after 4 1/2 years of this: He has lost almost all of his "autistic" behaviors with speech being the last hurdle to overcome. Mercury acts as a numbing agent and he couldn't feel where to place his tongue to make the correct sounds needed for speech production. From the age of 2 until 9 months ago (he is 8) he was completely non-verbal. He has been steadily progressing in this area since Oct. of last year, so we are hopeful. My point to all of this is, had it not been for that teachers' casual comment, my son would have never made this kind of progress with therapy and would always have been labeled and considered to be Autistic.
Jennifer Michelle
Story Idea-Adults Awareness
This posting was submitted from a person who has autism. This item was emailed to this blog--AR
What does the media not get?
A lot of things.i'm autistic. According to the media, there's a lot of things about my autism that would make me antisocial or cold. In fact, i'm quite emotional, passionate, and have a sense of empathy that is quite painful. Overload, in fact. i have to avoid the news because i am disturbed by so many things i can do nothing about... for just one example.Yes, empathy. i have empathy. i empathize with the feelings of others.
Like many topics, the media boils things down to bullet points for an audience that is the lowest common denominator. The bullet points are shallow, inappropriate (where one point might be valid in the context of certain people, it is NOT valid in the context of AUTISM in general).
It's oversimplified.
Another thing the media, and the so-called medical professionals, do not understand, seemingly at all, is that there are more than just children with autism. i'm 31. i'm an adult. i was never diagnosed as a child. i lived a life of what i call neuroracism. Basically, it's the same as regular racism, but i am not in a protected class and my "diversity" is not "validated" by the politically correct establishment. (i hate political correctness, by the way). i was, quite simply, abused. My entire life. i was bullied for being different in any way, pushed into situations i was not yet emotionally or intellectually ready to handle, forced to perform at a higher level in school than i was capable ("You're so smart, you can do better, you just have a bad attitude" i was told countless times)... etc. i have disabilities. Dyscalculia. Dyslexia. My short term memory cannot store as much information as most people (such as when someone rattles off a phone number, a date or an address, i need it given to me in smaller chunks instead of one big pile). i am not able to memorize information that is "irrelevant" to my life's context and i cannot use mnemonics because i'm too literal in my brain connections from concept to symbol.
All my life, i was forced to live by the expectations of people who could not grasp that i had a different neurological makeup. Friends, family, employers, etc... i knew what was different about me, but i had no official terminology or diagnosis to hand people. So i was harassed, pushed, bullied, taken advantage of and betrayed countless times because of people who refused to accept that there was anything about me that made me fundamentally different from anyone else.
Where was my support? Where was the professional medical world? Who was there to help me with my disabilities? Dyscalculia didn't even have a name when i started college, but i knew it existed. Ten years later, working at a university, a seminar on learning disabilities announces "dyscalculia" as a newly recognized disability. i was kind of angry.i had no accommodation. Ever. When i informed my boss at work, in order to attempt to make our working together go more smoothly and to improve communication, he was reluctant to believe me. He went home, Googled "Asperger's Syndrome" and came back to work thinking he knew everything. He then used it against me. He's a sociopath. i had just given him a weapon with which to attack me behind my back to my colleagues and it pleased him to give me work tasks that i had already explained to him were outside my abilities (not to mention not part of my job description - i'm not an engineer or a construction worker, yet he expected me to do measurements of a new location for our computer lab....).i lost my job through harassment and bullying from my boss, his boss and Human Resources. The sociopathic boss was completely free to do anything because i had no "protected class" status. i was not "on the books" with a "valid" disability that they had to accommodate by law.
Getting "on the books" was fraught with fantastic obstacles, one of which was simply cost for getting testing by so-called professionals, when i already had a diagnosis and i already knew me.i see constant talk about children and autism but i see nothing about the children who are undiagnosed, growing up to become adults. i see nothing discussing how that kind of life affects a person and what difficulties they face as an adult because of the complications or outright horrors of growing up as a victim of neuroracism.
i have much to offer the world as a skilled and intelligent human being. Yet, society is designed to allow the cold hearted and selfish to progress while the sensitive and fundamentally neurologically different get stepped on, blamed for attributes they do not possess, and marginalized.
The educational system failed me. My union failed me. My employers forced me out when i tried to defend myself against a sociopathic and abusive boss. We have the right to work in a non-hostile environment. Where was my support? No where. Bullying still has yet to become part of the "politically correct awareness" memes in this country.As i am marginalized and disrespected and generally not listened to, i sit here wondering why no one is willing to accept what i can offer.
First and foremost is knowledge about AS, growing up without being diagnosed, and several other neurological and psychiatric topics that i have self-studied in order to attempt to save my own life when the medical industry showed its ignorance to me by declaring that i could not possibly have AS because i communicate well and make eye contact.i also have eidetic memory (which i cannot control), an ability to recognize patterns and systems that exceeds more than 80% of the population (according to two sets of neuropsych testing), and have fantastic mechanical and spacial skills (unfortunately, not with my own body - my body map is not very functional and i can appear clumsy, which made me a target for every bully in physical education classes for 12 years of my life). i'm compulsively honest. i care for animals and people with great empathy. i see through complexities to see the simple (i am a major opponent of the "End User License Agreement" and other uses of language and law to defeat the spirit of law). i can grasp the complexities to understand the whole, where many are blocked by the bits and pieces, unable to see the forest for the trees. i have no tolerance for racism, sexism, or any segregation or divisionary behaviors. i am very keen on recognizing social dynamics (though i often cannot fit into them because they reject my "kind"; a sad irony). i am very capable of dealing with crisis and emergency situations without letting emotions bring me to panic or distress, making me useful in such situations to help others (granted, personal trauma is exascerbated as i now have PTSD from years of psychological abuse).
There is more to me than a set of bullet points and there are positives along with the negatives.i'm not autism. i have autistic neurology.i'm not a defect. i have different processes by which my brain handles stimuli and information (and emotions).i'm a varied individual with a lot to say and teach, but i find no one wishes to learn or listen because i have no credibility.
So i have a blog and a website where i express my life trauma in words and photography. They are not suitable for children, but i highly encourage educators to spend some time reading my blog and i am willing to discuss any topic openly if it means that the media and the world in general can be educated about the reality of autism: it's not a defect; it's a variation. It's not just a topic for children and parents.
Countless adults have come to discover their lives were made terribly complicated by having never been validated or correctly diagnosed. Some have become suicidal, it has been that bad (i am one).Again, i'm willing to talk about any topic, debunk myths from personal experiences, describe my own experiences, etc. But i highly recommend using my website as an example of what can happen when misdiagnosis or no diagnosis is made and no accommodations are made and a child becomes an adult in a world that needs labels and tags and "protected classes" in order to hand out a pallid offering of accommodations to those who have been born with different neurological functioning.
If you have any serious interest, here i am, and here is my website. Consider it expressionistic art created by an adult who grew up without the benefit of social awareness of autism. Consider it an example of why education is important. Consider it an example of a worst case scenario. Consider it an example that someone with autism thinks, feels, expresses and can know a great many things that the average person does not typically bother with. Consider it a portrait of one man who has been betrayed by his society, country, friends, family and institutions because he was born with a brain that is functionally different from what is considered to be "the norm."http://dysamoria.com/
-jace cavacini
What does the media not get?
A lot of things.i'm autistic. According to the media, there's a lot of things about my autism that would make me antisocial or cold. In fact, i'm quite emotional, passionate, and have a sense of empathy that is quite painful. Overload, in fact. i have to avoid the news because i am disturbed by so many things i can do nothing about... for just one example.Yes, empathy. i have empathy. i empathize with the feelings of others.
Like many topics, the media boils things down to bullet points for an audience that is the lowest common denominator. The bullet points are shallow, inappropriate (where one point might be valid in the context of certain people, it is NOT valid in the context of AUTISM in general).
It's oversimplified.
Another thing the media, and the so-called medical professionals, do not understand, seemingly at all, is that there are more than just children with autism. i'm 31. i'm an adult. i was never diagnosed as a child. i lived a life of what i call neuroracism. Basically, it's the same as regular racism, but i am not in a protected class and my "diversity" is not "validated" by the politically correct establishment. (i hate political correctness, by the way). i was, quite simply, abused. My entire life. i was bullied for being different in any way, pushed into situations i was not yet emotionally or intellectually ready to handle, forced to perform at a higher level in school than i was capable ("You're so smart, you can do better, you just have a bad attitude" i was told countless times)... etc. i have disabilities. Dyscalculia. Dyslexia. My short term memory cannot store as much information as most people (such as when someone rattles off a phone number, a date or an address, i need it given to me in smaller chunks instead of one big pile). i am not able to memorize information that is "irrelevant" to my life's context and i cannot use mnemonics because i'm too literal in my brain connections from concept to symbol.
All my life, i was forced to live by the expectations of people who could not grasp that i had a different neurological makeup. Friends, family, employers, etc... i knew what was different about me, but i had no official terminology or diagnosis to hand people. So i was harassed, pushed, bullied, taken advantage of and betrayed countless times because of people who refused to accept that there was anything about me that made me fundamentally different from anyone else.
Where was my support? Where was the professional medical world? Who was there to help me with my disabilities? Dyscalculia didn't even have a name when i started college, but i knew it existed. Ten years later, working at a university, a seminar on learning disabilities announces "dyscalculia" as a newly recognized disability. i was kind of angry.i had no accommodation. Ever. When i informed my boss at work, in order to attempt to make our working together go more smoothly and to improve communication, he was reluctant to believe me. He went home, Googled "Asperger's Syndrome" and came back to work thinking he knew everything. He then used it against me. He's a sociopath. i had just given him a weapon with which to attack me behind my back to my colleagues and it pleased him to give me work tasks that i had already explained to him were outside my abilities (not to mention not part of my job description - i'm not an engineer or a construction worker, yet he expected me to do measurements of a new location for our computer lab....).i lost my job through harassment and bullying from my boss, his boss and Human Resources. The sociopathic boss was completely free to do anything because i had no "protected class" status. i was not "on the books" with a "valid" disability that they had to accommodate by law.
Getting "on the books" was fraught with fantastic obstacles, one of which was simply cost for getting testing by so-called professionals, when i already had a diagnosis and i already knew me.i see constant talk about children and autism but i see nothing about the children who are undiagnosed, growing up to become adults. i see nothing discussing how that kind of life affects a person and what difficulties they face as an adult because of the complications or outright horrors of growing up as a victim of neuroracism.
i have much to offer the world as a skilled and intelligent human being. Yet, society is designed to allow the cold hearted and selfish to progress while the sensitive and fundamentally neurologically different get stepped on, blamed for attributes they do not possess, and marginalized.
The educational system failed me. My union failed me. My employers forced me out when i tried to defend myself against a sociopathic and abusive boss. We have the right to work in a non-hostile environment. Where was my support? No where. Bullying still has yet to become part of the "politically correct awareness" memes in this country.As i am marginalized and disrespected and generally not listened to, i sit here wondering why no one is willing to accept what i can offer.
First and foremost is knowledge about AS, growing up without being diagnosed, and several other neurological and psychiatric topics that i have self-studied in order to attempt to save my own life when the medical industry showed its ignorance to me by declaring that i could not possibly have AS because i communicate well and make eye contact.i also have eidetic memory (which i cannot control), an ability to recognize patterns and systems that exceeds more than 80% of the population (according to two sets of neuropsych testing), and have fantastic mechanical and spacial skills (unfortunately, not with my own body - my body map is not very functional and i can appear clumsy, which made me a target for every bully in physical education classes for 12 years of my life). i'm compulsively honest. i care for animals and people with great empathy. i see through complexities to see the simple (i am a major opponent of the "End User License Agreement" and other uses of language and law to defeat the spirit of law). i can grasp the complexities to understand the whole, where many are blocked by the bits and pieces, unable to see the forest for the trees. i have no tolerance for racism, sexism, or any segregation or divisionary behaviors. i am very keen on recognizing social dynamics (though i often cannot fit into them because they reject my "kind"; a sad irony). i am very capable of dealing with crisis and emergency situations without letting emotions bring me to panic or distress, making me useful in such situations to help others (granted, personal trauma is exascerbated as i now have PTSD from years of psychological abuse).
There is more to me than a set of bullet points and there are positives along with the negatives.i'm not autism. i have autistic neurology.i'm not a defect. i have different processes by which my brain handles stimuli and information (and emotions).i'm a varied individual with a lot to say and teach, but i find no one wishes to learn or listen because i have no credibility.
So i have a blog and a website where i express my life trauma in words and photography. They are not suitable for children, but i highly encourage educators to spend some time reading my blog and i am willing to discuss any topic openly if it means that the media and the world in general can be educated about the reality of autism: it's not a defect; it's a variation. It's not just a topic for children and parents.
Countless adults have come to discover their lives were made terribly complicated by having never been validated or correctly diagnosed. Some have become suicidal, it has been that bad (i am one).Again, i'm willing to talk about any topic, debunk myths from personal experiences, describe my own experiences, etc. But i highly recommend using my website as an example of what can happen when misdiagnosis or no diagnosis is made and no accommodations are made and a child becomes an adult in a world that needs labels and tags and "protected classes" in order to hand out a pallid offering of accommodations to those who have been born with different neurological functioning.
If you have any serious interest, here i am, and here is my website. Consider it expressionistic art created by an adult who grew up without the benefit of social awareness of autism. Consider it an example of why education is important. Consider it an example of a worst case scenario. Consider it an example that someone with autism thinks, feels, expresses and can know a great many things that the average person does not typically bother with. Consider it a portrait of one man who has been betrayed by his society, country, friends, family and institutions because he was born with a brain that is functionally different from what is considered to be "the norm."http://dysamoria.com/
-jace cavacini
Tuesday, October 2, 2007
Story Idea-may not be vax
This posting was submitted from a mother who wants to share her story and express the concern vaccines may not be to blame. This item was emailed to this blog--AR
Hello Ashley,
I can very well understand the grief and anger of many of these parents as two of my four boys are autistc . Personally I am not yet convinced it is due to vaccinations.
My reasons for this are my eldest son recieved all of his shots and also my second followed in the same manner. Afterward came my little love Zachery. Zachery was a wonderful baby and if any Mom had him as their first they would surely wish for more .
Around the age of two I began noticing him doing odd things and he did not seem to be having the type of side by side play time with his brother which most children do ( I am lucky enough to be the aunt of 7 nieces and nephews ) so I was well aware that something was not right. and by the way that brother and Zachery are 13 months apart. He would line up toys, insisted on wearing two different shoes ( one being a slipper and one being a tennis shoe ) and to top it off they had to be wet!!!
When Zach was four I had my fourth child ...he is now five and had only recently recieved some vaccinations and yes he is also autistic. My husbands brother had just told us that his son is very obsessive, prefers to be by himself when at day care,and very often gets excited and begins flapping his arms and twirling his hands and also likes lining toys up opposed to playing with them and again he is not yet vaccinated. My husband also has a cousin that has an autistic child that is my oldest sons age ( 14).
I am pretty much convinced that this is something that runs through a family line. The oddest part is when they speak of their deceased grandfather their seems to be some autistic signs. I would not doubt that there may be a seed planted that the mercury may worsen what is already there but I'm still leaning towards it running through the family.
As far as the rise in autism could it be years of it not being diagnosed as autisim? In third grade I had a boy in my class that would not be social with any other classmate and consistenly shook his head in a yes motion while wiggling his fingers and staring at them. Sadly enough I'm sure that not so many decades back there were many kids institutionalized without parents and doctors really knowing exactly what was going on. Hopefully I helped you with another point of veiw and always listen...these parents all work extra hard beyond what one can imagine unless in our shoes.
Thank you,
Mary
Hello Ashley,
I can very well understand the grief and anger of many of these parents as two of my four boys are autistc . Personally I am not yet convinced it is due to vaccinations.
My reasons for this are my eldest son recieved all of his shots and also my second followed in the same manner. Afterward came my little love Zachery. Zachery was a wonderful baby and if any Mom had him as their first they would surely wish for more .
Around the age of two I began noticing him doing odd things and he did not seem to be having the type of side by side play time with his brother which most children do ( I am lucky enough to be the aunt of 7 nieces and nephews ) so I was well aware that something was not right. and by the way that brother and Zachery are 13 months apart. He would line up toys, insisted on wearing two different shoes ( one being a slipper and one being a tennis shoe ) and to top it off they had to be wet!!!
When Zach was four I had my fourth child ...he is now five and had only recently recieved some vaccinations and yes he is also autistic. My husbands brother had just told us that his son is very obsessive, prefers to be by himself when at day care,and very often gets excited and begins flapping his arms and twirling his hands and also likes lining toys up opposed to playing with them and again he is not yet vaccinated. My husband also has a cousin that has an autistic child that is my oldest sons age ( 14).
I am pretty much convinced that this is something that runs through a family line. The oddest part is when they speak of their deceased grandfather their seems to be some autistic signs. I would not doubt that there may be a seed planted that the mercury may worsen what is already there but I'm still leaning towards it running through the family.
As far as the rise in autism could it be years of it not being diagnosed as autisim? In third grade I had a boy in my class that would not be social with any other classmate and consistenly shook his head in a yes motion while wiggling his fingers and staring at them. Sadly enough I'm sure that not so many decades back there were many kids institutionalized without parents and doctors really knowing exactly what was going on. Hopefully I helped you with another point of veiw and always listen...these parents all work extra hard beyond what one can imagine unless in our shoes.
Thank you,
Mary
Story Idea-Lyme
This is what I would like covered. I have studied much; my children are currently symptom-free on supplements. But I just had CD-57 testing done, which showed low, an indication of lyme. I have put this together so far and would really like for you to talk about this. Apparently lyme disease is causing tons of illnesses today. It is contagious and you are born with it - from your mother. Anyhow, it destroys a part of your immune system, leaving you at the mercy to toxins and pathogens. Vaccines, also make it worse, because they tilt the immune system to VH2, leaving VH-1 vulnerable, which correlates with the low CD57 area of the immune system. Thus, the big gapping hole is caused by the lyme. Droves of autistic children are testing positive for lyme. Know that lyme has always been a problem, but the problem is worsened by the extra toxins, vaccines, and pathogens we have today. If there is a specific website on a specific topic, just ask, but here are two good places to start:
Heidi
Story Idea-Diagnosis
I would like to see the importance of neuroimaging become recognized as an important diagnostic tool. My son, now 13, was dx’ed with autism at 2 ½ and Chiari Malformation (herniated cerebellar tonsils) at 5 ½. The Chiari was found from an MRI after I expressed great concern over his frightening head growth rate from about 4 mo to about a year old. I have since found that Chiari is a fairly prevalent occurrence in autistic kids, and many more may have it, but no one knows because they have never had an MRI. MRI is the only sure way to find Chiari.
Thank you for your important and valuable work!
Liz Welker
Monday, October 1, 2007
Blog
This posting was submitted from a mother who wants to learn more about the blog. This item was emailed to this blog--AR
I would be interested in learning more about your blog. I have a 9 year old son who is PDD NOS (high fuctioning autism) as well a Bipolar Disorder. I also have 2 other kids one of witch has BiPolar and the other who has no problems, (Thank God). I would be interested in finding out what kind of information you would need and if I even qualify for your blog.
Thank you for your time.
Susan Graffius
Catch up on
I would be interested in learning more about your blog. I have a 9 year old son who is PDD NOS (high fuctioning autism) as well a Bipolar Disorder. I also have 2 other kids one of witch has BiPolar and the other who has no problems, (Thank God). I would be interested in finding out what kind of information you would need and if I even qualify for your blog.
Thank you for your time.
Susan Graffius
Catch up on
Story Idea-Awareness
This posting was submitted from a mother who wants more awareness coverage. This item was emailed to this on this blog--AR
Hi,
I just wanted to mention that I took my son to see a specialist today. The nurse and the doctor really made me feel like my son was inconveniencing them. He can't help it if he gets afraid and acts out. Getting hysterical over an alcohol swab is just something that can happen with Autism.
Really if health professionals don't understand or know much about Autism, what can we expect from the general public? I run into this kind of treatment at doctor's offices all the time, even the regular pediatrician's office. My son's disorder is noted at the top of his chart. They have to see it. So why do I get the "your child is so spoiled" look all the time from the nurses? Why isn't someone educating these health professionals about this disorder?
Thanks for reading this,
Robyn Nichols
Hi,
I just wanted to mention that I took my son to see a specialist today. The nurse and the doctor really made me feel like my son was inconveniencing them. He can't help it if he gets afraid and acts out. Getting hysterical over an alcohol swab is just something that can happen with Autism.
Really if health professionals don't understand or know much about Autism, what can we expect from the general public? I run into this kind of treatment at doctor's offices all the time, even the regular pediatrician's office. My son's disorder is noted at the top of his chart. They have to see it. So why do I get the "your child is so spoiled" look all the time from the nurses? Why isn't someone educating these health professionals about this disorder?
Thanks for reading this,
Robyn Nichols
Story Idea-mercury poisoning vs autism
This posting was submitted from a mother who wants to share her story of vaccines history and possible effects. This item was emailed to this on this blog--AR
Hello,
My name is Sarah and I have a two and a half year old son. He is not on the Autistic Spectrum. When he got his six month shots, he had a wierd reaction. He was fussy for two days so I started to give him bottles of water instead of milk as it was summer and I thought he might be hot. He then started rocking back and forth, banging the same toy for literally three hours, not responding to loud and scary noises, not making eye contact, and making less noise, which he was a babbler before this.
So I was scared and looked up stuff about autism because I had heard that those were symptoms. I got a lot of vaccine research (he had had the flu shot, dtap, and I think first dose mmr) when I looked it up. I decided not to have him vaccinated and as time went on (three weeks eye contact to six weeks responding to noise then to nine weeks babbling and playing normally before they were gone completely and he still does one of them every once in awhile especially the lining up of toys alot but nothing for hours) he stopped doing most of those things. He learned to talk at around one year and learned to walk on schedule.
He now plays and is mostly normal. I credit this to the stopping of the shots. I also think giving him mostly water might have helped flush his system a little last time he got them. I am not sure, I do know that I feel he might have gotten worse otherwise. I think that as a boy he was more susceptible and I have an autoimmune disorder, so who knows what he might be really susceptible to yet?? (The link between mercury poisoning, the immune system, and the brain).
I am very skeptical that the vaccines have no link to autism or what might be mercury poisoning mistaken for autism. I don't know if you are looking for cases not really related to an autistic child but I thought this might be good for your project. For the record my husband nor I nor any future children, boy or girl will be getting vaccinated. Besides the mercury there are huge amounts of chemicals and additives. The way they are made altogether is totally disgusting. Monkey kidney cells, chick embryos, the puss scraped from calf's bellies? This is the way chickenpox, measles, some of dtap, and others are made. Why are we injecting this junk into babies or anyone for that matter?
Sarah Thorpe
Hello,
My name is Sarah and I have a two and a half year old son. He is not on the Autistic Spectrum. When he got his six month shots, he had a wierd reaction. He was fussy for two days so I started to give him bottles of water instead of milk as it was summer and I thought he might be hot. He then started rocking back and forth, banging the same toy for literally three hours, not responding to loud and scary noises, not making eye contact, and making less noise, which he was a babbler before this.
So I was scared and looked up stuff about autism because I had heard that those were symptoms. I got a lot of vaccine research (he had had the flu shot, dtap, and I think first dose mmr) when I looked it up. I decided not to have him vaccinated and as time went on (three weeks eye contact to six weeks responding to noise then to nine weeks babbling and playing normally before they were gone completely and he still does one of them every once in awhile especially the lining up of toys alot but nothing for hours) he stopped doing most of those things. He learned to talk at around one year and learned to walk on schedule.
He now plays and is mostly normal. I credit this to the stopping of the shots. I also think giving him mostly water might have helped flush his system a little last time he got them. I am not sure, I do know that I feel he might have gotten worse otherwise. I think that as a boy he was more susceptible and I have an autoimmune disorder, so who knows what he might be really susceptible to yet?? (The link between mercury poisoning, the immune system, and the brain).
I am very skeptical that the vaccines have no link to autism or what might be mercury poisoning mistaken for autism. I don't know if you are looking for cases not really related to an autistic child but I thought this might be good for your project. For the record my husband nor I nor any future children, boy or girl will be getting vaccinated. Besides the mercury there are huge amounts of chemicals and additives. The way they are made altogether is totally disgusting. Monkey kidney cells, chick embryos, the puss scraped from calf's bellies? This is the way chickenpox, measles, some of dtap, and others are made. Why are we injecting this junk into babies or anyone for that matter?
Sarah Thorpe
Story Idea-Cost and govt
This posting was submitted from a mother who wants coverage on costs and the gov helping. This item was emailed to this on this blog--AR
Autistic kids are like finger prints, you'll never find two that are the same. The biggest problem in my life has been funding. It will cost me $50000/yr to send my son to school. The gov't for some stupid reason will not give individual families money to help themselve. They will fund general programs that make families need to fit their kids into a box group...This is not posible. I think instead of funding programs that may only be of half use or no use at all to parents they should allow parents to draft their own proposals with their pediatrician for fund that can uniquely help each persons kid.
Nobody plans to have a disabled child! and Autism does not disciminate. Anyone can have an autistic child. Children with autism get worse and worse as polititians debate over the money issue! I was just in my cities news paper this last Wednesday about this same issue. Mother's break down because they just cant find the money to help their kids. This combined with fund being appriated to rediculous topics, like wars, space, gov't contests, drug and alcohol rehabilitation, sends moms like me through the roof. Im not saying that these things arn't important but lets face it 20 years ago amunitions expendatures were rated at $1.5 million dollars a minute globally!!!! (stat taken from: The Globe and Mail, Toronto Canada Jan.22.1987 in a speech given by Ivan L Head) but yet politions can't let parents have money to help their children! I am tired of watching my son get worse and worse because I cant afford to send him to school! $50 000.00 a yr!
Autistic kids are like finger prints, you'll never find two that are the same. The biggest problem in my life has been funding. It will cost me $50000/yr to send my son to school. The gov't for some stupid reason will not give individual families money to help themselve. They will fund general programs that make families need to fit their kids into a box group...This is not posible. I think instead of funding programs that may only be of half use or no use at all to parents they should allow parents to draft their own proposals with their pediatrician for fund that can uniquely help each persons kid.
Nobody plans to have a disabled child! and Autism does not disciminate. Anyone can have an autistic child. Children with autism get worse and worse as polititians debate over the money issue! I was just in my cities news paper this last Wednesday about this same issue. Mother's break down because they just cant find the money to help their kids. This combined with fund being appriated to rediculous topics, like wars, space, gov't contests, drug and alcohol rehabilitation, sends moms like me through the roof. Im not saying that these things arn't important but lets face it 20 years ago amunitions expendatures were rated at $1.5 million dollars a minute globally!!!! (stat taken from: The Globe and Mail, Toronto Canada Jan.22.1987 in a speech given by Ivan L Head) but yet politions can't let parents have money to help their children! I am tired of watching my son get worse and worse because I cant afford to send him to school! $50 000.00 a yr!
Story Ideas-Costs
This posting was submitted from a father who wants coverage on costs. This item was emailed to this on this blog--AR
Hi, I'm Bill, I saw your post on the Autism Speaks board (I am known as livsparents there). If you are going to do a series on autism, you simply MUST do at least one segment on costs of autism. It can be tackled from several different angles:
If you'd like to peruse my blog, I am at http://livsjourney.blogspot.com/ .
We have 5 children with our two youngest, 5 and 3, on the spectrum. My 5 year old, Olivia (Liv) is more severely affected, she is non-verbal and has various 'stims' (repetitive behaviors); the younger, Grace, is verbal and from outward appearances may be mistaken for a neurotypical child; but she will script and echo (scripts her favorite shows like Dora the Explorer and will echo things like saying "goodbye Gracie" rather than "goodbye daddy")
Thank for your attention to the autism issue,
William Kuhles
Hi, I'm Bill, I saw your post on the Autism Speaks board (I am known as livsparents there). If you are going to do a series on autism, you simply MUST do at least one segment on costs of autism. It can be tackled from several different angles:
- The cost to school systems and the local battles that ensue for parents to get the services that their children need vs budgetary constraints
- The cost of therapies for children for Applied Behavioral Analysis, Speech, Occupational, sometimes physical therapies
- The insurance battles to get these therapies covered.
- The run around that parents get between schools and/or insurance companies to have therapies covered. Therapies are often classified as educational and are denied by insurance on that basis (therapies should be done by the schools, they say). Non-restorative is the term often used by insurance saying that these children never had speech and that therefore speech is not covered because you are not trying to 'recover' speech already lost. ABA therapies are deemed 'experimental' by insurance even though it is probably one of the main strategies employed to help autistic children. Occupational therapies are not recognized as therapies for autism because of the aforementioned non restorative and because they can take many months to years to see benefits (occupational should be used to restore from 'injuries', insurance says)
- The financial devastation families go through getting their children the therapies they need and don't get within the school system or covered by insurance. I love to know the bankruptcy figures for families with autistic children
- The 'cost' of mainstreaming adult autistics; what is being done vs what COULD be done. Many of these adults may be 'underemployed' because of their 'social' disability; they may be competent and able, but may make potential employers uncomfortable.
If you'd like to peruse my blog, I am at http://livsjourney.blogspot.com/ .
We have 5 children with our two youngest, 5 and 3, on the spectrum. My 5 year old, Olivia (Liv) is more severely affected, she is non-verbal and has various 'stims' (repetitive behaviors); the younger, Grace, is verbal and from outward appearances may be mistaken for a neurotypical child; but she will script and echo (scripts her favorite shows like Dora the Explorer and will echo things like saying "goodbye Gracie" rather than "goodbye daddy")
Thank for your attention to the autism issue,
William Kuhles
Story Idea- AS not tragedy
This posting was submitted from a mother who wants to share she feels autism doesn't always have to be cured. This item was emailed to this on this blog---AR
Here's my thoughts, which have crystallized over the last few weeks due to lots of media coverage on autism.
1. Autism is not a tragedy. It is a neurobiological brain disorder that affects a significant number of children.
2. It is a spectrum, meaning that there are children who are highly functioning, such as my son with Asperger's Syndrome, and children who are completely non-verbal. Most of the focus tends to be on the lower functioning individuals.
3. Many of us do not think our child needs to be "cured." My 15-year-old son goes ballistic when he sees the commercials that speak of a cure. As he says, "they just don't understand, that's the way I was born." I do agree that there are small subset of the population who are susceptible to changes that occur after immunizations, but I believe that autism is primarily a genetic disease. Those individuals whose autism occurs after an immunization probably had the symptoms to begin with, but perhaps they were subtle, and not recognized by the parents/professionals until the child is effected by the immunization.
4. My son and his best friend (a girl) who also has AS, both told me that they would never want to get "rid of their Asperger's Syndrome" if given a choice. They were both emphatic about this.
5. Life on the spectrum is difficult. The educational system in our country is ill-prepared to handle these children, and as a result, the stress and trauma placed upon the children and their families it tremendous. EVERY MOM I know of a child who is on the spectrum is on some type of anti-depressant medication.
6. I would not trade my son, or change him, EVER. He has taught me patience, understanding, and appreciation for the little things in life. God gave him to me for a reason, and I am a better person for having been his mother.
Good luck with your blog.
Mary S. Halbach
mhalbach@chmca.org
Here's my thoughts, which have crystallized over the last few weeks due to lots of media coverage on autism.
1. Autism is not a tragedy. It is a neurobiological brain disorder that affects a significant number of children.
2. It is a spectrum, meaning that there are children who are highly functioning, such as my son with Asperger's Syndrome, and children who are completely non-verbal. Most of the focus tends to be on the lower functioning individuals.
3. Many of us do not think our child needs to be "cured." My 15-year-old son goes ballistic when he sees the commercials that speak of a cure. As he says, "they just don't understand, that's the way I was born." I do agree that there are small subset of the population who are susceptible to changes that occur after immunizations, but I believe that autism is primarily a genetic disease. Those individuals whose autism occurs after an immunization probably had the symptoms to begin with, but perhaps they were subtle, and not recognized by the parents/professionals until the child is effected by the immunization.
4. My son and his best friend (a girl) who also has AS, both told me that they would never want to get "rid of their Asperger's Syndrome" if given a choice. They were both emphatic about this.
5. Life on the spectrum is difficult. The educational system in our country is ill-prepared to handle these children, and as a result, the stress and trauma placed upon the children and their families it tremendous. EVERY MOM I know of a child who is on the spectrum is on some type of anti-depressant medication.
6. I would not trade my son, or change him, EVER. He has taught me patience, understanding, and appreciation for the little things in life. God gave him to me for a reason, and I am a better person for having been his mother.
Good luck with your blog.
Mary S. Halbach
mhalbach@chmca.org
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