| This person wants coverage on pesticides. This item was emailed to this blog--AR There are many mercury containing chemicals still present today. These pesticides are on our farms and golf courses in the form of stock piles. There are 150 trade chemical names containing mercury. We need attention drawn to these places for the waste collection programs or the clean sweep programs. Some are still being used like in Canada for turf mold and probably exported too.I think it should be urgent to follow the guide lines and * Actively participate increase local farm-a-syst or clean sweep programs. * Get word out about mercury in all local golf courses Just one way we can help keep toxins down. I wish mercury just wasnt used. |
Showing posts with label Story Idea. Show all posts
Showing posts with label Story Idea. Show all posts
Wednesday, November 14, 2007
Story Idea-pestecides containing mercury
Saturday, November 10, 2007
Story Idea-Diagnosis, Cost, Schools
This person wants to express their concern on some issues. This item was emailed to this blog--AR
Here are some issues:
Diagnosis
I am not sure how many different things I have been told my son had - He is 10 and was formally diagnosed with autism at 9.
First PDD, ADHD (still has that), Landeau Kleffner Syndrome, Sensory Integration Disorder, Slow - whats up with that.
I wonder about the mercury levels too because he also has numerous fillings in addition to being vaccinated.
Money
Who is going to pay me to stay home with my son as I can only work part time. SSI is only $623 a month - what does this pay for today??????????? Wth two people you don't even get $200 for food a month, so who will by supplements and special foods like gluten free bread etc.. which is supposed to be good for him. Let's not forget that most of these children are very smart and also deserve to go to plays and movies, bowling - none of which can be done because of the lack of $$$. Lets not forget that it takes 2 hours to get to the doctr and 2 hours to get back on public trans or the meltdowns because of flying bugs outside and the lack of personal boundaries and the stares and underthe breath comments and judgement from others.
Sorry Jenny, but I'm over it with your book, $4000 a week for special services of course your child would be getting better, but what about the normal people.????????????????????????????????? I will say that your story is as heart wrenching as mine and Sally's and Mary's and all the other moms that have had their hearts smashed into bits as you watch your child in the line at school and no one says hi to him or talks to him. n preschool I had a child walk up to me and say " I am glad you are here to get, ****, I hate him. I don't have time to write a book because I have to work part time and be home every evening with my son to do his homework. How much of the money made from this book DIRECTLY helped other children with autism. I saw nothing about proceeds or a % being donated.
Parents should do all they can to help their child but do not do any new diets without first consulting a physcian or someone with a degree in nutrition - you can't just take dairy out ofthe diet with out having a specific plan with how your child will get things like Calcium and Vitamin D and other nutrients - there is also organic milk without hormones and such. You can't replace food with pills or vitamins and it is unwise to do it without some PROPER guidence. Iguess if you have $500 or whatever to pay for all the really espensive stuf and fancy doctors - well then do it I guess.
Education
Schools are still not up to speed, because of lack of funding and educated staff. Don't lower the bar! This is the first year my son is getting a "report card" - why is that? he does the work?
Alternative schools or programs such as self contained classrooms or computer area (lack of) that keep the bar low and comfortable for the teacher that usually has no other support. As a parent I would love to volunteer at the school but that would negatively impact my child and our almost nil income.
I am constantly talking with the school and thought they are really nice - they don't have the resources.
Here are some issues:
Diagnosis
I am not sure how many different things I have been told my son had - He is 10 and was formally diagnosed with autism at 9.
First PDD, ADHD (still has that), Landeau Kleffner Syndrome, Sensory Integration Disorder, Slow - whats up with that.
I wonder about the mercury levels too because he also has numerous fillings in addition to being vaccinated.
Money
Who is going to pay me to stay home with my son as I can only work part time. SSI is only $623 a month - what does this pay for today??????????? Wth two people you don't even get $200 for food a month, so who will by supplements and special foods like gluten free bread etc.. which is supposed to be good for him. Let's not forget that most of these children are very smart and also deserve to go to plays and movies, bowling - none of which can be done because of the lack of $$$. Lets not forget that it takes 2 hours to get to the doctr and 2 hours to get back on public trans or the meltdowns because of flying bugs outside and the lack of personal boundaries and the stares and underthe breath comments and judgement from others.
Sorry Jenny, but I'm over it with your book, $4000 a week for special services of course your child would be getting better, but what about the normal people.????????????????????????????????? I will say that your story is as heart wrenching as mine and Sally's and Mary's and all the other moms that have had their hearts smashed into bits as you watch your child in the line at school and no one says hi to him or talks to him. n preschool I had a child walk up to me and say " I am glad you are here to get, ****, I hate him. I don't have time to write a book because I have to work part time and be home every evening with my son to do his homework. How much of the money made from this book DIRECTLY helped other children with autism. I saw nothing about proceeds or a % being donated.
Parents should do all they can to help their child but do not do any new diets without first consulting a physcian or someone with a degree in nutrition - you can't just take dairy out ofthe diet with out having a specific plan with how your child will get things like Calcium and Vitamin D and other nutrients - there is also organic milk without hormones and such. You can't replace food with pills or vitamins and it is unwise to do it without some PROPER guidence. Iguess if you have $500 or whatever to pay for all the really espensive stuf and fancy doctors - well then do it I guess.
Education
Schools are still not up to speed, because of lack of funding and educated staff. Don't lower the bar! This is the first year my son is getting a "report card" - why is that? he does the work?
Alternative schools or programs such as self contained classrooms or computer area (lack of) that keep the bar low and comfortable for the teacher that usually has no other support. As a parent I would love to volunteer at the school but that would negatively impact my child and our almost nil income.
I am constantly talking with the school and thought they are really nice - they don't have the resources.
Thursday, November 8, 2007
Story Idea-oxytocin
This person wants to share info about oxtocin. This item was emailed to this blog--AR
Have you guys heard about this new drug to help with adults with autism.It is Oxytocin apparently the same hormone they use to induce pregnancy.I had to be induced and wonder if it has anything to do with my sons autism.Its not yet been studied on children, but remarkable effects on adults with autism.
Its definitely something to look into,Who knows the side effects for each individual.Its hard to trust new things that arent fully studied yet.Then again how many recalls are on things that are studied.They even have a oxytoxin spry that changes peoples trust toward others.
It is a chemical they just started researching only adults.It would be nice to know more about this stuff.You should check into it and see if its what they say it is.Who knows anymore.It scarey for parents to decide which treatment to choose and it sad after all these years the only sources we have are studies not yet fully researched.I plan on trying Zeolite, but even that scaes me alittle bit.I hope the studdies get more developed soon.I want my son to come out of autism.
Have you guys heard about this new drug to help with adults with autism.It is Oxytocin apparently the same hormone they use to induce pregnancy.I had to be induced and wonder if it has anything to do with my sons autism.Its not yet been studied on children, but remarkable effects on adults with autism.
Its definitely something to look into,Who knows the side effects for each individual.Its hard to trust new things that arent fully studied yet.Then again how many recalls are on things that are studied.They even have a oxytoxin spry that changes peoples trust toward others.
It is a chemical they just started researching only adults.It would be nice to know more about this stuff.You should check into it and see if its what they say it is.Who knows anymore.It scarey for parents to decide which treatment to choose and it sad after all these years the only sources we have are studies not yet fully researched.I plan on trying Zeolite, but even that scaes me alittle bit.I hope the studdies get more developed soon.I want my son to come out of autism.
Monday, November 5, 2007
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
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.....
Tuesday, October 30, 2007
Story Idea-insurance
This person wants more coverage on insurance issues. This item was emailed to this blog--AR
Hi-I wanted to contact you concerning your coverage of autism. I do not live in your area but since you, as a member of the press have asked for input I am taking this oportunity to express my opinion concerning the presses typical coverage of autistic disorders.
I am the Father of a 4 year old by who was diagnosed with an Autistic Spectrum disorder at 18 months. To our knowledge our son has never recieved thimerisol in any of his vaccines. In fact, on the day he went for his 18 month check up he was diagnosed. This check up included giving him the MMR vaccine. To be clear-he was diagnosed as literally minutes before recieving the vaccine.
I do not discount the posibility that mercury or vaccines play a role in some childrens autism. However i find it to less likely than the billions of other potentialy viable causes. I say this because it has been tested and tested and tested and the tests do not indicate this is the cause. Meanwhile just about everything else has not been tested.
You, as a member of the press are looking for controversy. I understand that. Unfortunately you, and the rest of the press are missing the real controversy which is the blatant discrimination by the medical insurance industry. Over 90% of health insurance policies will not cover what main stream medicine recommends to treat children with these disorders. Occupational, Speech and behavioral therapies.
There is no controversy among health professionals that these interventions, when administered early, result in the best outcome for our children. Yet this contoversy is drowned out by the dead horse argument of vaccines and thimerisol. Moreover the paltry sums of funding going to finding treatments for autism are being drained to fund even more testing for an argument that has already been decided. The press has an obligation to report on controveries that affect public policy.
Where is the report that asks the insurance industry-Why are you descriminating against Autistic Children? If you investigated this, you will find that the justifications for this has no merit. We live in a society in which treatment or erectile dysfunction are funded by insurance yet treatments for autism are not-why? The most blatant effect of this descrimination is the economic reality that without insurance unding for autism treatments, no economic incentive exists for finding better treatments. Who is going to fund research into something they will not be paid for? Examples of the lack of economic incentive and/ or misguided priorities for research in finding better treatments are numerous.
I will give you one: Medical science has known for over forty years that abnormal EEG's, siezures and autism are closely related. However, to date, no research has ever been conducted to determine whether autistic children- who are given drugs to correct abnormal EEG's and eliminate the potential for siezures-autistic symptoms get better or worse after treatment with these drugs. The why is obvious-drug companies will be paid for treating siezures, they will not be for treating Autism.
My wife and I funded out of our pocket over $30,000 last year for main stream medicine recomended therapies. Afer considerable effort our insurance company reimbursed $408. Because my insurance was under Cobra law; due to my changing jobs I paid for our health insurance. The premiums were $1200 per month or $14,400. I currently make $84,000 per year plus benefits. Congress is currently trying pas legislation to give free insurance to children whose families make up to $64,000 per year.
Yet this coverage will not cover Autism nor will the coverage the rest of us pay for through our employer sponsored plans. A few states are passing legislation to change this problem. However, neither the federal government under which ERISA sponsored plans (the laws which govern insurance plans for most of us) or my state has passed such legislation.
I do not know what your state is doing. But I urge you to find out. We are overwhelmed with the 24/7 job of caring for a child with an ASD. It is outrageous to me to have to pay insurance pemiums and taxes whch fund every disorder except the one my son has.
Richard Fauth, P.E., M.B.A, CSSB.
Hi-I wanted to contact you concerning your coverage of autism. I do not live in your area but since you, as a member of the press have asked for input I am taking this oportunity to express my opinion concerning the presses typical coverage of autistic disorders.
I am the Father of a 4 year old by who was diagnosed with an Autistic Spectrum disorder at 18 months. To our knowledge our son has never recieved thimerisol in any of his vaccines. In fact, on the day he went for his 18 month check up he was diagnosed. This check up included giving him the MMR vaccine. To be clear-he was diagnosed as literally minutes before recieving the vaccine.
I do not discount the posibility that mercury or vaccines play a role in some childrens autism. However i find it to less likely than the billions of other potentialy viable causes. I say this because it has been tested and tested and tested and the tests do not indicate this is the cause. Meanwhile just about everything else has not been tested.
You, as a member of the press are looking for controversy. I understand that. Unfortunately you, and the rest of the press are missing the real controversy which is the blatant discrimination by the medical insurance industry. Over 90% of health insurance policies will not cover what main stream medicine recommends to treat children with these disorders. Occupational, Speech and behavioral therapies.
There is no controversy among health professionals that these interventions, when administered early, result in the best outcome for our children. Yet this contoversy is drowned out by the dead horse argument of vaccines and thimerisol. Moreover the paltry sums of funding going to finding treatments for autism are being drained to fund even more testing for an argument that has already been decided. The press has an obligation to report on controveries that affect public policy.
Where is the report that asks the insurance industry-Why are you descriminating against Autistic Children? If you investigated this, you will find that the justifications for this has no merit. We live in a society in which treatment or erectile dysfunction are funded by insurance yet treatments for autism are not-why? The most blatant effect of this descrimination is the economic reality that without insurance unding for autism treatments, no economic incentive exists for finding better treatments. Who is going to fund research into something they will not be paid for? Examples of the lack of economic incentive and/ or misguided priorities for research in finding better treatments are numerous.
I will give you one: Medical science has known for over forty years that abnormal EEG's, siezures and autism are closely related. However, to date, no research has ever been conducted to determine whether autistic children- who are given drugs to correct abnormal EEG's and eliminate the potential for siezures-autistic symptoms get better or worse after treatment with these drugs. The why is obvious-drug companies will be paid for treating siezures, they will not be for treating Autism.
My wife and I funded out of our pocket over $30,000 last year for main stream medicine recomended therapies. Afer considerable effort our insurance company reimbursed $408. Because my insurance was under Cobra law; due to my changing jobs I paid for our health insurance. The premiums were $1200 per month or $14,400. I currently make $84,000 per year plus benefits. Congress is currently trying pas legislation to give free insurance to children whose families make up to $64,000 per year.
Yet this coverage will not cover Autism nor will the coverage the rest of us pay for through our employer sponsored plans. A few states are passing legislation to change this problem. However, neither the federal government under which ERISA sponsored plans (the laws which govern insurance plans for most of us) or my state has passed such legislation.
I do not know what your state is doing. But I urge you to find out. We are overwhelmed with the 24/7 job of caring for a child with an ASD. It is outrageous to me to have to pay insurance pemiums and taxes whch fund every disorder except the one my son has.
Richard Fauth, P.E., M.B.A, CSSB.
Monday, October 29, 2007
Story Idea-yeast,diet, vax, allergies
This person wants to share their ideas for the series. This item was emailed to this blog.--AR
Hello! Thanks for covering such an important topic. Here is what I think needs to come to the forefront. I'm the mom of two kids with ASD so I think I'm qualified to weigh in.
Hello! Thanks for covering such an important topic. Here is what I think needs to come to the forefront. I'm the mom of two kids with ASD so I think I'm qualified to weigh in.
For one, wwww.tacanow.com and www.austim.com have some fabulous information about autism that is rarely talked about.
Other than that: 1) Yeast- Candida Albicans. This is a "theory" that in my opinion is right on that affects all of our ASD children. It causes problems such as sensory issues, weak immune systems, fatigue, irritability, speech delay, digestive issues, rashes, eczema, poor appetite, sleep disturbances, sound sensitivity and much more. It is worth looking into and very valid
2) Gluten Free Casein Free diet- supposedly controversial but plays into the yeast situation. Very effective when used long enough...i.e. most parents who claim that this doesn't work have only tried it for a month at most. It takes up to 9 months for the body to rid itself of gluten and casein remnants.
3) Vaccines- I know that this is also supposedly controversial but it is fact that not only is thimerosal used in vaccinces, but just as bad as that is the fact that formaldehyde, arsenic, aluminum bicarbonate (a neurotoxin), tin, and antifreeze are used at preservatives. Would you feed this stuff to your infant in his or her bottle? Research from the cdc.gov website the side effects of formaldehyde and the other ingredients including thimerosal. Isn't it quite interesting that acute mercury poisoning and autism share the same exact side effects? Then look at the others...do you think that brain damage and seizures is an acceptable side effect?
4) Allergies- vaccienes are also known to be the culprit of food allergies like wheat, milk, egg, gelatin and latex. This is because these ingredients are all present in vaccines and we introduce them to our infant children when they are less than 48 hours old to their very immature immune systems
5) Also talk about why it is that medical doctors seem to offer little or no support to those whose children have been diagnosed with autism. It's because they don't know much of anything about it to begin with . Most of a parents best education comes from other parents- not doctors.
I also wanted to point out: Isn't it interesting that parents are taught to look to our pediatricians/doctors for advice on autism from the moment they are diagnosed. The problem is that once a parent approaches the doctor, suddenly they know virtually nothing beyong "Hey, let's get your child onto a 2-6 months waiting list (if you're lucky) for speech therapy, Physical therapy and Occupational Therapy. Let's cross our fingers and hope for the best!" Although I agree that these therapies play a very important role in helping children with autism, I don't think it's enough.
Also, I am outraged that our insurance companies cover these "band-aid" treatments (as I have called them) but they do not bother to cover the core of the very effective treatments that parents are using to help their own children. I'm talking about proper supplements, vitamins, diets and anti yeast/fungal medications aka biomedical treatments. These are effective treatments....I am amazed at how few doctors actually recommend special diets for people with most any medical condition. I am also annoyed that insurance does not cover testing for vitamin deficiencies (another problem with our kids) and enzyme deficiencies. There should also be testing of our childrens blood work to determine how much of a problem yeast actually is for an individual child so that an appropriate treatment can be determined.Basically, I am upset because insurance companies and medical doctors are all so concerned about putting a "band-aid" over the effects that have already taken place but no one wants to get to the heart of the problem and look deeper inside of the child to fix what can be fixed. If we can do that, then it would be a lot easier for parents to deal with the rest of what is not able to be fixed and can rest easier knowing that they did everything they could do to help their child when all is said and done.
Want to know more? feel free to contact me! or view my story in a nutshell http://www.associatedcontent.com/article/412250/controversy_healing_autism.html
Sunday, October 28, 2007
Story Idea-Spectrum
This parent wants more coverage on awareness, diet, and echolilia. This item was emailed to this blog--AR
Something that should be covered, if it hasn't already, is to cover the ranges of children with Autism Spectrum Disorder. I mean by that is some of the kids behavioral issues when at home or outside. Not every child acts the same. Yes, they do share some issues; however, there are some children who acts out in different ways.
To show the public that not every autism child acts like this or that. And when a child is having a meltdown, study what other people see or think. So that the public can understand what a parent is going through during that time. So people can understand that we are not dealing with our child's emotions but everyone else's who is reacting to it in some way or form.
Also cover Echolilia in Autism children. I don't know if you ever heard of it but it effects at least 85% of children who have autism. And there are two different kinds of echolilia, you would be surprise how many parent's children have it and they don't know to much about it or have families like mine who does not understand what it is and why it is done. Some think that you can just make it stop but what they don't understand that children do it because they need to and if you try to stop it, they can pick up something else that can be even worse to replace what they are doing. And it is still echolilia in some form. Please cover that too, alot of parents on cafe moms (the newbe's) may not know to much about it.... I find it a good information for everyone.
thanks,
gina
I am sorry but I forgot to mention to add eatting issues. My son is 8 and does not eat stuff and he is growing but he is also losing weight to. Alot of families struggle with it so much and there are alot of people (like me) who can not afford to pay the experts to help me to get him to eat. There are parents who have no choice but to put their child on feeding tubes.
I feel that if we make the public know about that, maybe the state can start to look at helping families that are going through this with some kind of government help. I know I want my son to eat and gain weight but we are not so lucky to afford to pay or may not have the insurance coverage to get it done.
Also you should put out there how many families who have children who are disable, how hard it is for them to get coverage. Medical coverage is so hard to get now, but when your child is sick, they don't except these children who need it the most. I feel that if this is brought out, it would show the president how important the state should cover our children. Because if they don't then there will be so many children in the state that are not covered when they need it the most. I feel that the insurance companies should except these children because they need it so much and they know it too!!!! I hope you can take that and run with it too.
thank you,
gina
Something that should be covered, if it hasn't already, is to cover the ranges of children with Autism Spectrum Disorder. I mean by that is some of the kids behavioral issues when at home or outside. Not every child acts the same. Yes, they do share some issues; however, there are some children who acts out in different ways.
To show the public that not every autism child acts like this or that. And when a child is having a meltdown, study what other people see or think. So that the public can understand what a parent is going through during that time. So people can understand that we are not dealing with our child's emotions but everyone else's who is reacting to it in some way or form.
Also cover Echolilia in Autism children. I don't know if you ever heard of it but it effects at least 85% of children who have autism. And there are two different kinds of echolilia, you would be surprise how many parent's children have it and they don't know to much about it or have families like mine who does not understand what it is and why it is done. Some think that you can just make it stop but what they don't understand that children do it because they need to and if you try to stop it, they can pick up something else that can be even worse to replace what they are doing. And it is still echolilia in some form. Please cover that too, alot of parents on cafe moms (the newbe's) may not know to much about it.... I find it a good information for everyone.
thanks,
gina
I am sorry but I forgot to mention to add eatting issues. My son is 8 and does not eat stuff and he is growing but he is also losing weight to. Alot of families struggle with it so much and there are alot of people (like me) who can not afford to pay the experts to help me to get him to eat. There are parents who have no choice but to put their child on feeding tubes.
I feel that if we make the public know about that, maybe the state can start to look at helping families that are going through this with some kind of government help. I know I want my son to eat and gain weight but we are not so lucky to afford to pay or may not have the insurance coverage to get it done.
Also you should put out there how many families who have children who are disable, how hard it is for them to get coverage. Medical coverage is so hard to get now, but when your child is sick, they don't except these children who need it the most. I feel that if this is brought out, it would show the president how important the state should cover our children. Because if they don't then there will be so many children in the state that are not covered when they need it the most. I feel that the insurance companies should except these children because they need it so much and they know it too!!!! I hope you can take that and run with it too.
thank you,
gina
Tuesday, October 23, 2007
Corbin's story
This mother wants to share her story. This item was emailed to this blog--AR
Hi.
My name is Rebecca. I am the mother of three beautiful sons Corbin, Brecken and Abraham. My six year old Corbin was diagnosed with PDD-NOS in December of 2006 at the age of 5 years 8 months old. This is his story.
On a late April afternoon in 2001 Corbin came into this world. Physically perfect in every way. However, there was something not quite right, something that the doctors nor us could see. Corbin was born with a form of Autism known as pervasive developmental disorder not otherwise specified.
The differences in his first 18-24 months of life were so subtle no one would have caught on really. He spoke, walked, fed himself and did all of the things any normal child does during that time. He learned how to count to ten, all of his colors, how to spell his name and many other things all far before he was three years old. There was always something not quite right though. Something just below the surface that we either couldn't see or couldn't accept.
As an infant Corbin was the most well behaved baby I had ever seen. He rarely cried and was very content entertaining himself. I never found it odd that to get him to sleep I had to lay him on my chest and pat his back and rear for hours sometimes. I just thought it was a weird baby thing, just like some children prefer to be rocked or walked while falling asleep. I also never made the connection that even as a tiny infant he would be fine for hours doing his own thing. We could take him out shopping all day and rarely ever hear a peep from him. He didn't cry when he was wet or dirty or much ever really. However, as soon as we got in the car to start home the screaming started. He would scream for hours after a trip to Walmart and I always blamed it on over stimulation. When we went out of town for trips he wouldn't sleep much at all, in fact he couldn't really sleep anywhere other than in his own home. Like our shopping trips as soon as we got in the car to come home the screaming would start and aside from when he was sleeping it would last for days. Getting him back into a normal routine would take weeks. I again blamed all this on over stimulation.
He also had horrible tantrums. Nothing like I had ever seen in any other child. He would throw himself on the ground and smash his head into the sidewalk at times. The really unusual part was the fact it wouldn't even phase him he would just continue to tantrum.
Sometime between 2-4 a number of other unusual behaviors popped up. He was obsessed with spinning objects. He would line his cars up and then tantrum if anyone moved them. He also began covering his ears and tantruming whenever a train went through town. He couldn't answer questions of any kind, and he couldn't differentiate between he and she. When he began preschool at 4 and 1/2 he had major problems, he cried frequently through out the day. Anytime they changed activities Corbin would cry and tantrum. He wouldn't sing with the other children in music class, but would only sit with his hands over his ears. He also didn't play with the other children but usually chose to play alone alongside the other kids but never with them.
After a particularly horrible session in music one day Corbin was sent to the principle's office for refusing to participate, and sitting with his hands over his ears. When he got to the principle's office he refused to speak with her at all. She contacted me at home and spoke to me and told me what was going on. I was infuriated that they had sent a 4 and 1/2 year old child to see the principle for something so trivial and I got online. I typed in over sensitive hearing and putting hands over ears and one of the very first things Google pulled up was a sight about Autism. That was the day I learned that my gut was right everyone else was wrong. My son was not just spoiled and naughty he was Autistic.
We went through hearing tests (normal), physicals (normal) no answers from anyone. Corbin was given a developmental screening by the county which he failed miserably and was put into pre school special education. However, my husband, and my family was not ready to hear the words Autism. They kept saying oh he is only immature next year he will be like a different kid. Against my own better judgment I listened to them. Really, what did I know he was my first born, all of these people had other children they knew what was normal and what wasn't.
Kindergarten started and Corbin was mainstreamed into a class with 24 other students. A few weeks into the year we decided to pull him out for about an hour a day. When things didn't improve his kindergarten instructor called in the special education director and finally someone listened to me. She saw all the things in Corbin that I had been screaming about for years. I was convinced Corbin had Asperger's Syndrome but she said what she saw was PDD-NOS. This was the only thing I needed to push my family over the edge. Finally someone who was well educated saw the same things I had been seeing. Back to the pediatrician's office we went. This time we were told Corbin probably had ADHD and I put my foot down. I refused to put Corbin on any medication without a referral to someone who worked with Autistic children. We waited for three months for that appointment.
On December 12, 2006 I walked into that doctor's office already knowing what they would tell me. The news didn't come as a shock but maybe more so a relief that finally a Doctor believed me. Corbin was diagnosed with PDD-NOS that day and finally we started getting him the help he so very desperately needs.
Now it is not quite a year later. He has grown and improved more in the last year than he probably had in the entire 2 years preceding. He has had his speech therapy cut in half because he has met so many goals. His tantruming and behavior has improved so tremendously that his behavior plan at school had to be greatly modified. We still have our blows though. We recently found out his IQ was significantly lower than we were hoping. He will also have to be tested for Asthma soon because contrary to popular belief Autism definitely contributes to physical ailments as well. It is NOT just a brain thing. When he gets ill he regresses and has episodes of echolalia, and looses bladder control. When it is bad enough he loses the ability to speak and uses only gestures to communicate with us. Our battle is far from over, but with the major improvements he has made in such little time I can easily see that Corbin has a very bright and beautiful future ahead of him.
Hi.
My name is Rebecca. I am the mother of three beautiful sons Corbin, Brecken and Abraham. My six year old Corbin was diagnosed with PDD-NOS in December of 2006 at the age of 5 years 8 months old. This is his story.
On a late April afternoon in 2001 Corbin came into this world. Physically perfect in every way. However, there was something not quite right, something that the doctors nor us could see. Corbin was born with a form of Autism known as pervasive developmental disorder not otherwise specified.
The differences in his first 18-24 months of life were so subtle no one would have caught on really. He spoke, walked, fed himself and did all of the things any normal child does during that time. He learned how to count to ten, all of his colors, how to spell his name and many other things all far before he was three years old. There was always something not quite right though. Something just below the surface that we either couldn't see or couldn't accept.
As an infant Corbin was the most well behaved baby I had ever seen. He rarely cried and was very content entertaining himself. I never found it odd that to get him to sleep I had to lay him on my chest and pat his back and rear for hours sometimes. I just thought it was a weird baby thing, just like some children prefer to be rocked or walked while falling asleep. I also never made the connection that even as a tiny infant he would be fine for hours doing his own thing. We could take him out shopping all day and rarely ever hear a peep from him. He didn't cry when he was wet or dirty or much ever really. However, as soon as we got in the car to start home the screaming started. He would scream for hours after a trip to Walmart and I always blamed it on over stimulation. When we went out of town for trips he wouldn't sleep much at all, in fact he couldn't really sleep anywhere other than in his own home. Like our shopping trips as soon as we got in the car to come home the screaming would start and aside from when he was sleeping it would last for days. Getting him back into a normal routine would take weeks. I again blamed all this on over stimulation.
He also had horrible tantrums. Nothing like I had ever seen in any other child. He would throw himself on the ground and smash his head into the sidewalk at times. The really unusual part was the fact it wouldn't even phase him he would just continue to tantrum.
Sometime between 2-4 a number of other unusual behaviors popped up. He was obsessed with spinning objects. He would line his cars up and then tantrum if anyone moved them. He also began covering his ears and tantruming whenever a train went through town. He couldn't answer questions of any kind, and he couldn't differentiate between he and she. When he began preschool at 4 and 1/2 he had major problems, he cried frequently through out the day. Anytime they changed activities Corbin would cry and tantrum. He wouldn't sing with the other children in music class, but would only sit with his hands over his ears. He also didn't play with the other children but usually chose to play alone alongside the other kids but never with them.
After a particularly horrible session in music one day Corbin was sent to the principle's office for refusing to participate, and sitting with his hands over his ears. When he got to the principle's office he refused to speak with her at all. She contacted me at home and spoke to me and told me what was going on. I was infuriated that they had sent a 4 and 1/2 year old child to see the principle for something so trivial and I got online. I typed in over sensitive hearing and putting hands over ears and one of the very first things Google pulled up was a sight about Autism. That was the day I learned that my gut was right everyone else was wrong. My son was not just spoiled and naughty he was Autistic.
We went through hearing tests (normal), physicals (normal) no answers from anyone. Corbin was given a developmental screening by the county which he failed miserably and was put into pre school special education. However, my husband, and my family was not ready to hear the words Autism. They kept saying oh he is only immature next year he will be like a different kid. Against my own better judgment I listened to them. Really, what did I know he was my first born, all of these people had other children they knew what was normal and what wasn't.
Kindergarten started and Corbin was mainstreamed into a class with 24 other students. A few weeks into the year we decided to pull him out for about an hour a day. When things didn't improve his kindergarten instructor called in the special education director and finally someone listened to me. She saw all the things in Corbin that I had been screaming about for years. I was convinced Corbin had Asperger's Syndrome but she said what she saw was PDD-NOS. This was the only thing I needed to push my family over the edge. Finally someone who was well educated saw the same things I had been seeing. Back to the pediatrician's office we went. This time we were told Corbin probably had ADHD and I put my foot down. I refused to put Corbin on any medication without a referral to someone who worked with Autistic children. We waited for three months for that appointment.
On December 12, 2006 I walked into that doctor's office already knowing what they would tell me. The news didn't come as a shock but maybe more so a relief that finally a Doctor believed me. Corbin was diagnosed with PDD-NOS that day and finally we started getting him the help he so very desperately needs.
Now it is not quite a year later. He has grown and improved more in the last year than he probably had in the entire 2 years preceding. He has had his speech therapy cut in half because he has met so many goals. His tantruming and behavior has improved so tremendously that his behavior plan at school had to be greatly modified. We still have our blows though. We recently found out his IQ was significantly lower than we were hoping. He will also have to be tested for Asthma soon because contrary to popular belief Autism definitely contributes to physical ailments as well. It is NOT just a brain thing. When he gets ill he regresses and has episodes of echolalia, and looses bladder control. When it is bad enough he loses the ability to speak and uses only gestures to communicate with us. Our battle is far from over, but with the major improvements he has made in such little time I can easily see that Corbin has a very bright and beautiful future ahead of him.
Monday, October 22, 2007
The myth of the autism epidemic
I recently started AutismNewsBeat.com to provide working journalists with an evidence-based resource for writing about autism. Having spent several years in a newsroom, I understand how the pressures of deadlines, combined with an unfamiliar topic, can sometimes lead to inaccurate coverage. By offering constructive reviews of press coverage, and links to accurate and informative articles and studies, I hope to change the way some in the press approach this complicated and emotional topic. I am also the father of a 12-year-old boy with autism, and my interest in this topic is just one more of the many gifts my son has given me.
Popular press coverage of autism is bedeviled by a number of misperceptions. Chief among these is the idea, stated with much certainty, that we are in the midst of an autism epidemic. In fact, it is far from certain that the prevalence autism spectrum disorders is any greater today than in the past.
But the myth of the autism epidemic will not die. It's like Jason in the Friday the 13th movies - you can shoot, burn, drown, crush, stab or gut the monster, but it will always return for the sequel. Neither facts or logic will deter the myth's defenders, because the political and business agendas of so many rest on its very existence. Without an epidemic, claims that vaccines cause autism are moot, and the overnight quack-cure industry goes into Chapter 11. These things are certain to me, and will become clear to others as more reporters rely on evidence rather than the agenda-driven fear mongering of others.
Epidemic promoters point to an increase in autism diagnoses over the last 20 years, from 1:2,100 to 1:166. There are several reasons for this change that have nothing to do with an epidemic. For example, there were no standard criteria for autism in the Diagnostic and Statistical Manual (DSM) until 1980, and the criteria in the DSM have undergone several changes since then. It's entirely possible that Jeremy, the autistic college student whose story is told here, wouldn't have been labeled autistic 20 years ago.
Imagine if the definition of "legally blind" underwent the same diagnostic change as autism. Today, approximately 1:250 persons in the US is legally blind, defined as having 20/200 vision or worse in the better eye that cannot be improved with corrective lenses. If the definition was changed to 20/100 vision, thousands more would qualify for the tax breaks and services, leading to greater awareness and more diagnoses. The phrase "blind as a bat" would be replaced by "blind as a sheepdog", and a faux epidemic would be born, albeit with less outrage.
So why the outrage over autism? There are a number of factors which make autism a fertile field for fraud and misunderstanding, but the key enabler is the very thing most capable of driving a stake through the monster's heart: the internet. Joseph at Natural Variation explored the internet's pernicious influence on autism here.
Enter "autism epidemic" into a Google search and you'll receive 107,000 hits. Of the first ten hits, six lead us to quack medical sites, misleading blog entries, and poorly-sourced news stories. One is a dry but accurate Wikipedia entry which explains the crucial difference between incidence and prevalence. As we delve further, we come to a 2005 Medscape interview with two well-respected researchers who explain the epidemic that wasn't. Another hit leads us to a Time Magazine interview with Dr. Roy Grinker, author of Unstrange Minds, a must-read book for anyone who wants to understand the science and politics of autism. The last hit is a favorable review of Grinker's book by blogger Kristina Chew, PhD, of AutismVox.
The problem with so much information available to so many is that although the question of whether an epidemic exists is scientific, a critical mass of misinformed on-line commentary rests on how "real" the epidemic feels. Typical is this comment left on AutismVox:
So I thank Ashley and KOMU for this experiment in participatory journalism. May it lead to higher standards for separating the wheat of truth from the chaff of nonsense. In future posts I'll write about some other enduring myths that bedevil or understanding of autism.
Popular press coverage of autism is bedeviled by a number of misperceptions. Chief among these is the idea, stated with much certainty, that we are in the midst of an autism epidemic. In fact, it is far from certain that the prevalence autism spectrum disorders is any greater today than in the past.
But the myth of the autism epidemic will not die. It's like Jason in the Friday the 13th movies - you can shoot, burn, drown, crush, stab or gut the monster, but it will always return for the sequel. Neither facts or logic will deter the myth's defenders, because the political and business agendas of so many rest on its very existence. Without an epidemic, claims that vaccines cause autism are moot, and the overnight quack-cure industry goes into Chapter 11. These things are certain to me, and will become clear to others as more reporters rely on evidence rather than the agenda-driven fear mongering of others.
Epidemic promoters point to an increase in autism diagnoses over the last 20 years, from 1:2,100 to 1:166. There are several reasons for this change that have nothing to do with an epidemic. For example, there were no standard criteria for autism in the Diagnostic and Statistical Manual (DSM) until 1980, and the criteria in the DSM have undergone several changes since then. It's entirely possible that Jeremy, the autistic college student whose story is told here, wouldn't have been labeled autistic 20 years ago.
Imagine if the definition of "legally blind" underwent the same diagnostic change as autism. Today, approximately 1:250 persons in the US is legally blind, defined as having 20/200 vision or worse in the better eye that cannot be improved with corrective lenses. If the definition was changed to 20/100 vision, thousands more would qualify for the tax breaks and services, leading to greater awareness and more diagnoses. The phrase "blind as a bat" would be replaced by "blind as a sheepdog", and a faux epidemic would be born, albeit with less outrage.
So why the outrage over autism? There are a number of factors which make autism a fertile field for fraud and misunderstanding, but the key enabler is the very thing most capable of driving a stake through the monster's heart: the internet. Joseph at Natural Variation explored the internet's pernicious influence on autism here.
Enter "autism epidemic" into a Google search and you'll receive 107,000 hits. Of the first ten hits, six lead us to quack medical sites, misleading blog entries, and poorly-sourced news stories. One is a dry but accurate Wikipedia entry which explains the crucial difference between incidence and prevalence. As we delve further, we come to a 2005 Medscape interview with two well-respected researchers who explain the epidemic that wasn't. Another hit leads us to a Time Magazine interview with Dr. Roy Grinker, author of Unstrange Minds, a must-read book for anyone who wants to understand the science and politics of autism. The last hit is a favorable review of Grinker's book by blogger Kristina Chew, PhD, of AutismVox.
The problem with so much information available to so many is that although the question of whether an epidemic exists is scientific, a critical mass of misinformed on-line commentary rests on how "real" the epidemic feels. Typical is this comment left on AutismVox:
What remains to be true is that I personally know at least 50 autistic children. I don’t need someone to tell me they’re autistic. Their behaviors scream it to me. 10 years ago I knew one child who exhibited the behaviors we now know as autism. And most people reading this know the same exact thing.And the anecdotes lodge themselves in the national conversation over autism that play out in the popular media every day.
So I thank Ashley and KOMU for this experiment in participatory journalism. May it lead to higher standards for separating the wheat of truth from the chaff of nonsense. In future posts I'll write about some other enduring myths that bedevil or understanding of autism.
Sunday, October 21, 2007
Story Idea-Our story
This person wants to share their story...This item was emailed to this blog--AR
Thousands of children are not getting the help they deserve because their parents are misinformed or uneducated. My 5-year old son Elias is high functioning Autistic, but you would not know it when first meeting him. Most people think of Rain Man when they think Autism. Elias appears to make eye contact, is very social with adults and is extremely verbal and polite.
We were turned away from services because miseducated doctors told us he couldn't be Autistic because he, "makes eye contact and gestures." These were doctors! With the growing epidemic (1 in 150 children) it is imperative that we show other parents that their "weird" child may be on the spectrum. People always told us that Elias was "just sensitive." I started feeling like maybe I was the person who had something wrong with them. I felt like no one else saw the things my husband and I did. I have never felt so helpless in my life.
We pushed to find out what was wrong with him. It took two years to get help. One doctor told us, if we hadn't pushed he would have surely slipped through the cracks and he would not be getting the therapy he so desperately needs to have a good shot of a independent life. How many other children are slipping through the cracks? Many parents don't know what to do. They are not sure what is wrong with their child. Education is key!
Thousands of children are not getting the help they deserve because their parents are misinformed or uneducated. My 5-year old son Elias is high functioning Autistic, but you would not know it when first meeting him. Most people think of Rain Man when they think Autism. Elias appears to make eye contact, is very social with adults and is extremely verbal and polite.
We were turned away from services because miseducated doctors told us he couldn't be Autistic because he, "makes eye contact and gestures." These were doctors! With the growing epidemic (1 in 150 children) it is imperative that we show other parents that their "weird" child may be on the spectrum. People always told us that Elias was "just sensitive." I started feeling like maybe I was the person who had something wrong with them. I felt like no one else saw the things my husband and I did. I have never felt so helpless in my life.
We pushed to find out what was wrong with him. It took two years to get help. One doctor told us, if we hadn't pushed he would have surely slipped through the cracks and he would not be getting the therapy he so desperately needs to have a good shot of a independent life. How many other children are slipping through the cracks? Many parents don't know what to do. They are not sure what is wrong with their child. Education is key!
Saturday, October 13, 2007
Story Idea-Spectrum Awareness
This person wants more coverage on the Spectrum. This item was emailed to this blog.---AR
Hello! I am not exactly sure if this is what you want, but I will still try. The most important thing that I believe you should cover is the Spectrum itself. It is so massive and so varied. People always assume if there is a child with Autism that the child will always act like "Rainman".
My son just turned six. He was diagnosed with Asperger's Syndrome. He is not "Rainman". No child on the Spectrum is the same. You can not say that your child does not have Autism because they don't spin wheels on cars or they look at you or they are affectionate. My son is extremely affectionate, although not appropriately (giving strangers hugs, etc.). However, my son can appear very, what we in the community call, "Neurotypical". It is just as author Patricia Romanowski Bashe stated, "…Are they indistinguishable from typical peers? It depends on who's looking and what they're looking for." This is very unfortunate considering some people just assume that these children are rude, defiant or that they have horrible parents.
The general population needs to deviate from this atrocious black and white depiction of Autism that is seared into their brains. These children need help. The parents need to be responsible and advocate for their children and everyone else should hop off the ignorance wagon and give the parents and most importantly the children, a break!
Thank you so much for your time!
Kellye
Story Idea-Awareness
This parent wants more coverage of awareness. This item was emailed to this blog--AR
hello, my name is Georgina and I live in Ca. I know you are doing a story in our own area but if you could please somehow pass it over to other stations around the US.
I say that because there are so many families who children have this and struggle so much. And if we educate our media, maybe some awareness can come out of it.
I suggest to cover if you have not already been told about how many times most families have to go to see doctors before they get the right diagnose. That there are still doctors out there like my peds doctor which had told me that my son was ADHD and then just gave me drugs for it.
And just like any other parent, I tried it but it did not work. He got worse, so bad that he attack me. And he was never like that. So we stop the drugs and we had to go ourselves to see what we needed to do.
It wasn't until my teacher who was at one point a child psychologist that advise me to see a nuro doctor then go and see a child phy to get an psychological evaluation. And that did not come from my son's own doctor. We went through hoops before we found out what was wrong with him. And cover please please not just the children that can not function so well with autism but the high functioning one. You don't know what it is like for a parent (like me) who child is like that and how other people treat him when he is having a melt down.
I tell you if you ask parents like us, you would be amazed on how many people look at them and say there is nothing wrong with them. And the school system... yea, they treat them like nothing is wrong with them either because they don't look like the rest of the other kids who have it and are in bad cases. When I try to give my son's teacher papers on or about his condition, she did not take it. She said that she had a child who had a different type. And what people don't understand that yes there are different types but they are different in other areas.
So now we can only hope that his school will either give him what he needs or we may have to get him changed. There are many parents who are battling with their schools about this... you would be amazed or unless you know of many parents already that is going through that. thank you for hearing my input. I do hope I have helped a little!
Georgina.
hello, my name is Georgina and I live in Ca. I know you are doing a story in our own area but if you could please somehow pass it over to other stations around the US.
I say that because there are so many families who children have this and struggle so much. And if we educate our media, maybe some awareness can come out of it.
I suggest to cover if you have not already been told about how many times most families have to go to see doctors before they get the right diagnose. That there are still doctors out there like my peds doctor which had told me that my son was ADHD and then just gave me drugs for it.
And just like any other parent, I tried it but it did not work. He got worse, so bad that he attack me. And he was never like that. So we stop the drugs and we had to go ourselves to see what we needed to do.
It wasn't until my teacher who was at one point a child psychologist that advise me to see a nuro doctor then go and see a child phy to get an psychological evaluation. And that did not come from my son's own doctor. We went through hoops before we found out what was wrong with him. And cover please please not just the children that can not function so well with autism but the high functioning one. You don't know what it is like for a parent (like me) who child is like that and how other people treat him when he is having a melt down.
I tell you if you ask parents like us, you would be amazed on how many people look at them and say there is nothing wrong with them. And the school system... yea, they treat them like nothing is wrong with them either because they don't look like the rest of the other kids who have it and are in bad cases. When I try to give my son's teacher papers on or about his condition, she did not take it. She said that she had a child who had a different type. And what people don't understand that yes there are different types but they are different in other areas.
So now we can only hope that his school will either give him what he needs or we may have to get him changed. There are many parents who are battling with their schools about this... you would be amazed or unless you know of many parents already that is going through that. thank you for hearing my input. I do hope I have helped a little!
Georgina.
Thursday, October 11, 2007
Story Idea-Autism Is Crying Out!
This person thinks we should cover autism awareness. This item was emailed to this blog---AR
Ashley, please do a segment on the "Autism Awareness" gap that exists between the average person on the street, the people that watch the news on KOMU TV8, the typical college student, our any other group of people or individuals, and the people or individuals that know or have been touched by someone with "Autism".
Some questions might be:
What do you know about "Autism"?
What would you like to know about "Autism?"
Are you or will you watch a TV News Series on "Autism"? Why? Or Why not?
Do you know what a spectrum disorder is?
Do you know how many individuals have "Autism"?
Who is affected more by "Autism" males or females?
How do you get "Autism"?
How do you cure "Autism"?
How long does "Autism" last"?
I think you get the idea. I think the results would "raise a lot of eyebrows".
I hope you can find some way included some "Autism 101 basics" on all your segments and can find a way reach and educate people and individuals that have not been touched by someone with "Autism". We need "Autism Awareness" to be in all our minds and in our hearts always. We need everyone to understand that we are all an important piece of the "Autism Puzzle" and we need to all work together in trying to find and assemble all the pieces of the "Autism Puzzle". We need everyone outside the "Autism Community" to become involved and be as passionate about solving the "Autism Puzzle" as we are. We need everyone inside the "Autism Community" to work together and to put all their pieces of the puzzle on the table. Then maybe we will have a chance to see what the finished "Autism Puzzle" looks like.
Your Special Friend, (living with "Autism" for over 32 years)
Scott and his dad Steve
P.S. Ashley thanks for being a "Friend" and "Don't Ever Give Up!"
Story Ideas many topics
This person wants to share what they wish the media would cover. This item was emailed to this blog---AR
I would like people to know that our kids can get better and be productive people with early intervention.
I would like to not be accused of being a bad mother or not spending enough time with my son. I am exhausted every single day, give me a break!
I would like any kind of medical insurance.
I would like Doctors to get in the game and not look at us, tell us they are sorry and send us out the door. There are treatments available who cares if it is medicine or natural. We just need help. Get on board people!
I would like Doctors to listen to us and learn. We know more about this than they do.
I would like parents of "normal" children to teach their children not to discriminate against our children and to be compassionate. They are kids just like yours & have feelings just like yours.
I would like parents of "normal" children to not shield their children from mine just because he is different. He is a beautiful child, just like yours & he is also a very intelligent child.
He can be capable of amazing things if we just let him live his life and quit judging him. He is smarter than we are.
My son is 8, he reads, spells and punctuates at a University level. Who would not want this?? If so WHY????
My husband and I are some of the luckiest people in the word to have such a special little boy. I am a mother just like you. I love my son. He is not broken, he is perfect.
I would like people to know that our kids can get better and be productive people with early intervention.
I would like to not be accused of being a bad mother or not spending enough time with my son. I am exhausted every single day, give me a break!
I would like any kind of medical insurance.
I would like Doctors to get in the game and not look at us, tell us they are sorry and send us out the door. There are treatments available who cares if it is medicine or natural. We just need help. Get on board people!
I would like Doctors to listen to us and learn. We know more about this than they do.
I would like parents of "normal" children to teach their children not to discriminate against our children and to be compassionate. They are kids just like yours & have feelings just like yours.
I would like parents of "normal" children to not shield their children from mine just because he is different. He is a beautiful child, just like yours & he is also a very intelligent child.
He can be capable of amazing things if we just let him live his life and quit judging him. He is smarter than we are.
My son is 8, he reads, spells and punctuates at a University level. Who would not want this?? If so WHY????
My husband and I are some of the luckiest people in the word to have such a special little boy. I am a mother just like you. I love my son. He is not broken, he is perfect.
Wednesday, October 10, 2007
Story Idea-Gluten Free Casein Free Diet
This person wants to share their story of doing a diet. This item was emailed to this blog--AR
Here is my story .
Here is my story .
My twins were diagnosed with Autism in October 2006. I started doing research on all things Autism and found the website autism.com <http://www.autism.com/>where it says that autism is treatable through the gluten free casein free diet.I did my own research with a PhD in
"Google" and began to search through my own cabinets and found that everything has gluten in it. I started the diet in December but found it difficult because of all the sweets at school during the holidays. That December, I used the 10 weeks of GFCF through the http://www.tacanow.com/ website, and started eliminating dairy.
The second week I did breakfast, the third week I did dinner, and the fourth snack. I started giving them leftovers for lunch. By the end of January we were fully gfcf. I kept a food diary and noticed they were hyper from other foods, apples, tomatoes and other vegetables. I found the Feingold diet and started taking away artificial colors and flavors and all the foods listed in
the Feingold plan. After being on Feingold stage 1, and GFCF for about a month, the teachers said they were noticing improvements. The kids were completely potty trained and seemed better. Still not being completely sure the diet was working, I gave them some sweet hearts from Valentines day and they had a complete meltdown. I knew I would be much stricter on
their foods from now on. That May, I started to reintroduce the fruits and vegetables from Feingold stage 2 and the temper tantrums came back, the messy underwear came back. Every three days after I'd reintroduced a new food they would melt down and mess their pants.
By August, after keeping a food diary for two months with these foods, Beginning kindergarten, I had a list of foods to stay away, and remarkably different children. Now, people look at them and doubt that they ever were autistic in the first place. My pediatrician who had seen
them when they were babies, said she didn't believe they were autistic until she saw the report from the other doctor.
I was told by the first doctor that they would need a lifetime of constant care and the only suggestion she gave me was respite care away from them now and then. She said they could never go in a regular classroom.
One of my sons is transitioning to a regular classroom. He used to be in physical therapy because he could barely write his name at the end of preschool and couldn't draw.Now, he has homework to write sentences, and he can write all his numbers and letters. He had summer school last summer, and his teacher said he can read like a third grader in
kindergarten. He is drawing pictures for fun.
He used to not be understood by anyone but me. He had speech therapy at home, and at school. Now, his speech is much clearer, and we can have complete conversations. I can't get him to stop talking now. He is understood by his classmates. The other kids call him by name, and he is
making friends. He still has speech therapy at school but not much more than other kids his age. The important thing is that he understands the conversation and can talk to other people without me. I went into a class once, and he raised his hand to answer a question. He now knows who hie should be listening to, and he's focusing on his teacher. He's even singing in Music Class!
He used to shake his head when he ran and would fall on his own feet. Now, he runs to school with his brother. He used to get occupational therapy, and because he had problems not knowing where to put his feet.
He used to hold his hands on his ears and scream, because large motor activity was much too hard. Now he is beginning to transition into a large PE class.
I know he wouldn't have made such remarkable progress in such a short time if I had not found the gluten free casein free diet and took away the additives and high phenolic foods from the Feingold diet, he would not have improved so dramatically.
My other son had a touch of OCD. If I didn't travel the exact route to get places, he would scream until I turned around. Now, he studies maps and searches for new ways to go. If all the clocks didn't have the exact same time, he would scream. When we cooked dinner, round pans had to go on round trivets. Rectangle pans were to be placed only on rectangle trivets. Now he doesn't care about any of that.
We tried to go bowling with him once, and he screamed until we would leave because it was too loud. Three months after the diet, we had a bowling party. He cheered everyone on, and had a blast.
He is in regular kindergarten, and except for some minor tweaks getting used to the routine on the first day, he has had green stamps for good behavior ever since. He is in a regular kindergarten and has his own friends. He has a helper, but seems to be just fine.
Please, do something on the affect on diet and it's relationship to behavior. This diet has changed my life. To see articles about diet
go to my website and blog
howtostartgfcf.com <http://www.howtostartgfcf.com/>
http://autismpreventiondiet.blogspot.com/
Tuesday, October 9, 2007
Story Idea-no need for change
This posting was submitted from a person who wants to express some people with autism don't want any help through therapies and other treatments. This item was emailed to this blog--AR
Hi I got your message on autistics.org. I am not on the spectrum, but have a 7 year old non verbal boy who is. I went to the site to find out what really is going on with people with autism. No one could tell me, and I felt like my son wanted me to know. There are no garuntees that people are who they claim, but I decided to go and have an open mind.
I learned a lot. First, I learned that people with autism really like who they are, and if given the choice they wouldn't change it. It gives them a unique point of view, and sometimes it gives them the gift of artistry. I felt like I missed the mark as a parent. Instead of spending so much time wondering where my son would fit in in the world, I should've been learning about him and making sure his self esteem stayed in tact. I mean, he has to be happy. Who cares if on an IQ test he looks like he knows nothing. He is a human being with strengths and weaknesses. There is so much I wish I could say, but it is hard for adults with autism. They don't feel like people value their opinion and that if they have an opinion, they are "too smart" to be really autistic. It is not true.
I would hope someone would put up a blog, but I doubt it. If you really want to learn, I'd suggest reading past posts, and slowly asking questions. You can learn a lot, and these adults on the spectrum are VERY intelligent, and I know one day my son will be the same. You need to stop and look to be able to see it-otherwise you'll miss its subtlety.
Hi I got your message on autistics.org. I am not on the spectrum, but have a 7 year old non verbal boy who is. I went to the site to find out what really is going on with people with autism. No one could tell me, and I felt like my son wanted me to know. There are no garuntees that people are who they claim, but I decided to go and have an open mind.
I learned a lot. First, I learned that people with autism really like who they are, and if given the choice they wouldn't change it. It gives them a unique point of view, and sometimes it gives them the gift of artistry. I felt like I missed the mark as a parent. Instead of spending so much time wondering where my son would fit in in the world, I should've been learning about him and making sure his self esteem stayed in tact. I mean, he has to be happy. Who cares if on an IQ test he looks like he knows nothing. He is a human being with strengths and weaknesses. There is so much I wish I could say, but it is hard for adults with autism. They don't feel like people value their opinion and that if they have an opinion, they are "too smart" to be really autistic. It is not true.
I would hope someone would put up a blog, but I doubt it. If you really want to learn, I'd suggest reading past posts, and slowly asking questions. You can learn a lot, and these adults on the spectrum are VERY intelligent, and I know one day my son will be the same. You need to stop and look to be able to see it-otherwise you'll miss its subtlety.
Monday, October 8, 2007
Story Idea-neurofeedback
This posting was submitted from a peron who wants to share their view on neurofeedback . This item was emailed to this blog--AR
There are several kinds of brain biofeedback that have proven effective in significantly reducing the symptoms of autism. In most studies, the actual training time within all sessions is between 10 to 20 hours.
HemoEncephaloGraphy, HEG. (blood-brain-image)
Passive Infrared HEG. An infrared sensor is placed on the forehead reading thermal emissions. A DVD plays when a threshold is met. When below threshold the movie may pause or reduce in size or volume. This encourages metabolic activity up in the pre-frontal cortex. Succeeding in this exercise feels like an indescribable calm focus.
Infrared photography verifies that the forehead becomes bright and more even after each HEG session and as sessions progress. This is closely linked to symptom improvement. I speculate that this exercise expands the capillary bed and dendritic connections enhancing neural capacity throughout the brain which is used for self-regulation.
ElectroEncephaloGraphy EEG.
Reducing brain wave amplitudes. Most EEG biofeedback aims to inhibit brain wave intensity. Most common is to encourage a reduction in high amplitude brain waves with biofeedback-driven computer games. Another strategy is to quell brain wave turbulence in all frequencies by pausing a multi-media stream briefly during surges. Another approach disrupts dysfunctional patterns with an incredibly small pulse of a radio carrier wave. All these approaches depend on neuroplasticity and the urge for self-regulation.
Improving brain wave connectivity. Coherence refers to the temporal similarity of brain wave forms. Too much or too little coherence is a problem. One approach is to design game-like reinforcers when 3 conditions are met: lower amplitudes at 1-6 Hz and 20-30 Hz with increased amplitudes at 5-12 Hz. These kinds of protocols are determined by clinical judgement, neuropsychological testing or Quantitative EEG brain maps.
There is no standard of practice. Each approach above tends to have an initial period of success and then approach an asymptote. Some practitioners use one approach for 20 sessions and switch to another method. While all these approaches are highly effective, by themselves and in combinations, no clinic anywhere has used all these approaches. We do know that a complete remission of symptoms and accelerated development to all age appropriate levels is possible is some cases of autism.
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