Last night I heard something that I have been waiting to heard since Nov of 95.....

[RebeccaC]

Some of you know that I did some lobbing for Can, Cure Autism Now, in the mid to late 90s. JFS in IL's husband and I were on the board of CAN in IL. Can had a bill they want to get through congress that would help establish centers of excellence for the field of Autism similar to the the one for Alzheimer's and Learning Disabilities. These types of centers is where folks could get dx, treatment, and where medical research would be done.

 

It just so happened that Speaker Hastert was my congressman and that some one in my church was a close personal friend to Hastert as well as being a background player in IL and national politics. Through this man Hastert heard about my sons and how remarkably well they were doing with medical treatment. He wanted to meet me and help me. My friend told me I should go to a pro-life banquet. Which I did that is where I met Hastert who then had his aid make an appointment for JFS's Husband, me and Can. From there he gave me and CAN training on how to lobby and opened all kinds of doors for us in Washington. The bummer in it all is after years of hard work President Clinton signed in to law what we had been lobbing for but he and congress did not fund it.

 

I bowed out of lobbing because hsing had to come first and because there were others in CAN in CA who could handle it. I have tho watch for years and prayed that some one with real power would do something. Congressman Dan Burton was able to do some but not enough. Last night during the debate I found the third reason why I am voting for McCain and Palin, warning rough paraphrase coming, McCain said that if he is elected he and Palin will look for the cause (which are many) and the cure for Autism. Palin's sister has a child on the spectrum. I hope and I have felt for years that a person high up in the executive branch could do more than a single congressman and grassroots parents movement.

 

This is not written to get anyone to change their vote it is written because for me it is a dream come true! I have no idea how JFS is voting and she has nothing to do with this post. Her dh just happens to be part of the story.

 

It was just amazing to hear something that I have been wanting to hear for years with more to back it up than just an empty promise to get my vote. Palin having a sister with a son on the spectrum means Palin is probably emotionally involved with this, really does care, and really does want to do something about it. I just felt Wow! What I was a small part of helping start so many years ago and could not really finish might just get finished by a hockey mom with a nephew on the spectrum and a gentleman bold enough to put her on his ticket.

 

I really do not want this to becaome a Palin McCAin bashing thing or even an Obama Biden bashing thing. This is about a dream come true for me. Something that I thought I would never hear but did.

[OnTheBrink]

That's wonderful! That has to be a wonderful feeling, that something's going to be done!

[Vida Winter]

That is so great to hear, Rebecca. Thanks for sharing your story.

 

~Dana

[clarkacademy]

My son has autism It is great to see others who care about this.:grouphug:

[Mom to Aly]

As Obama pointed out, under McCain there would be tremendous cuts in money for research for diseases such as autism, while he wants more funding for such research.

[asta]

Wow.

 

If I were cured I wouldn't be me. Neither would my son (be himself, that is).

 

I can't even fathom "curing" the essence of myself.

 

I'm happy that you are reaching your dreams, though. We're reaching ours, as well. (that isn't sarcasm)

 

 

 

Aspie Asta and her aspie son

Edited October 16, 2008 by asta

[JudoMom]

Wow.

 

If I were cured I wouldn't be me. Neither would my son (be himself, that is).

 

I can't even fathom "curing" the essence of myself.

 

I'm happy that you are reaching your dreams, though. We're reaching ours, as well. (that isn't sarcasm)

 

Aspie Asta and her aspie son

 

This isn't meant to be snarky or rude or anything else but an honest, sincere question.

 

If being an "aspie" is the "essence of yourself", why have a label on yourself (or your son)?

 

This is something I'm truly trying to understand, and hopefully you can help explain it to me because the only people I know with the "Aspie label" are kids.

 

I'm going to be away from my computer for about 6 hours, and I really hope this question doesn't offend, because it's really not meant to. I'm just honestly curious.

[hsmamainva]

I have two children on the autism spectrum and, for years, with my son (who's now 14), I ran all over the state, trying to "cure him". We went to doctors -- yes, medical MD's who charge $600 for an office visit, that we had to wait 3 months to receive -- spent $2000 on "lab work" (hair samples, urine samples, stool samples, bloodwork, etc.) -- and spent another $2000 on "supplements" -- vitamins, creams, chelation treatment, etc.

 

And then, we realized, we love our son just the way he is!!

 

Now .. I'm all for trying to find a MEDICALLY PROVEN way to prevent autism, if it can be found --- similar to how they have discovered that folic acid during pregnancy can reduce the risk of some physical birth defects (I can't remember the name of the condition at the moment).

 

Our 6 year old is also autistic. I could spend TONS -- and I mean TONS -- of money trying to "fix her", ala Jenny McCarthy and her "cured" son -- but I choose to put our money into speech therapy, occupational therapy, and one-on-one homeschooling.

 

The only thing that HAS worked for both my 14 year old and my 6 year old (other than therapy -- vision for my son and speech & OT for daughter) is changing their diet. My 14yo did great on the Feingold diet -- and still cannot tolerate artificial colors and preservatives, and my 6yo does very well when she doesn't have dairy -- we're still undecided on the wheat aspect.

 

BUT...one can try removing foods from a child's diet and see if they help without spending $$$$ on doctors visits and supplements.

 

AND...as far as who I'm voting for .. it's Barack Obama!!! Our medical insurance, that we're paying $500 a month for, doesn't cover therapy for my autistic children. So $2000 for my 14yo's vision therapy -- out of pocket. $75 an hour for occupational therapy -- out of pocket. $55 an hour for speech therapy -- out of pocket.

 

We need major health care reform, and we need it now, and that's how we'll help children with autism.

[Audrey]

This isn't meant to be snarky or rude or anything else but an honest, sincere question.

 

If being an "aspie" is the "essence of yourself", why have a label on yourself (or your son)?

 

This is something I'm truly trying to understand, and hopefully you can help explain it to me because the only people I know with the "Aspie label" are kids.

 

I'm going to be away from my computer for about 6 hours, and I really hope this question doesn't offend, because it's really not meant to. I'm just honestly curious.

 

 

I'm obviously not Asta, but I think I understand where she is coming from.

 

Not everyone views their differences as "diseases." There are many people on the autism spectrum who don't like the label of 'disease.' They simply do not feel that way about themselves (or about their loved ones who may be on the spectrum).

 

Over time, there have been many differences that got labeled as 'disease.' They may be diseases to some, but not to everyone. It is a matter of perception. Some people do not choose to be 'the disease,' but instead embrace their differences as part of the uniqueness that is who they are.

 

Asta, if I've overstepped, I apologize. I'm pretty passionate about the value of uniqueness, so I couldn't help myself from jumping in. :)

[Stacie]

Wow.

 

If I were cured I wouldn't be me. Neither would my son (be himself, that is).

 

I can't even fathom "curing" the essence of myself.

 

I'm happy that you are reaching your dreams, though. We're reaching ours, as well. (that isn't sarcasm)

 

 

 

Aspie Asta and her aspie son

 

 

I agree that your and your son's Asperger diagnosis is a contributing factor to what makes you "you" and that it is a considerable influence to your personality and individualism.

 

However, and I hope you agree with this point, there are many children unable to properly function in society in order to live independently. If there is any way to cure autism I sincerly hope we get it. I do not want to see other children live the life lived by my cousin, who was unable to be independent his entire life. He had limited communication and social skills, no marketable job skills, and couldn't properly function without someone overseeing him daily. He died two years ago from cancer.

 

I think we are to embrace our abilities and know they are what makes us special and unique. If we can open the doors of a mental prison to some in order to allow them to reach greater heights, we should pursue it. If we are unable to open the door to each one, we should love those living in their own place. Searching for a cure is not a method to change the underlying character of a person, just to give them more tools at their disposal to use to the benefit of themselves, their families, and society in general.

 

Stacie--mom to a "cured" child on the spectrum

[JudoMom]

I'm obviously not Asta, but I think I understand where she is coming from.

 

Not everyone views their differences as "diseases." There are many people on the autism spectrum who don't like the label of 'disease.' They simply do not feel that way about themselves (or about their loved ones who may be on the spectrum).

 

Over time, there have been many differences that got labeled as 'disease.' They may be diseases to some, but not to everyone. It is a matter of perception. Some people do not choose to be 'the disease,' but instead embrace their differences as part of the uniqueness that is who they are.

 

Asta, if I've overstepped, I apologize. I'm pretty passionate about the value of uniqueness, so I couldn't help myself from jumping in. :)

 

But why use the label on yourself at all? Why not just be unique without the label? My own personal opinion is that there are many people who have been labeled are simply different and unique. So I'm wondering why, if you view something as part of your essence, why you'd use a label on it at all.

[JFSinIL]

[[/b] I have no idea how JFS is voting and she has nothing to do with this post. Her dh just happens to be part of the story.

 

.

 

Hey - I have no idea, either!!! :001_smile:

[RebeccaC]

Wow.

 

If I were cured I wouldn't be me. Neither would my son (be himself, that is).

 

I can't even fathom "curing" the essence of myself.

 

I'm happy that you are reaching your dreams, though. We're reaching ours, as well. (that isn't sarcasm)

 

 

 

Aspie Asta and her aspie son

 

 

Asta my son was totally mute and brain deaf at 4, he looked like a Kanner's kid, traditional classic low functioning Autism. Not some one on the edge of the spectrum. I understand those folks who defend being semi autistic but we were told by more than one doctor to institutionalize our 3 year old son. That is how bad it was. Not a Temple Grandin autism but the full blown real deal. Not an aspie we can function in society deal but a no hope thing.

[RebeccaC]

I have two children on the autism spectrum and, for years, with my son (who's now 14), I ran all over the state, trying to "cure him". We went to doctors -- yes, medical MD's who charge $600 for an office visit, that we had to wait 3 months to receive -- spent $2000 on "lab work" (hair samples, urine samples, stool samples, blood work, etc.) -- and spent another $2000 on "supplements" -- vitamins, creams, chelation treatment, etc.

 

And then, we realized, we love our son just the way he is!!

 

Now .. I'm all for trying to find a MEDICALLY PROVEN way to prevent autism, if it can be found --- similar to how they have discovered that folic acid during pregnancy can reduce the risk of some physical birth defects (I can't remember the name of the condition at the moment).

 

Our 6 year old is also autistic. I could spend TONS -- and I mean TONS -- of money trying to "fix her", ala Jenny McCarthy and her "cured" son -- but I choose to put our money into speech therapy, occupational therapy, and one-on-one homeschooling.

 

The only thing that HAS worked for both my 14 year old and my 6 year old (other than therapy -- vision for my son and speech & OT for daughter) is changing their diet. My 14yo did great on the Feingold diet -- and still cannot tolerate artificial colors and preservatives, and my 6yo does very well when she doesn't have dairy -- we're still undecided on the wheat aspect.

 

BUT...one can try removing foods from a child's diet and see if they help without spending $$$$ on doctors visits and supplements.

 

AND...as far as who I'm voting for .. it's Barack Obama!!! Our medical insurance, that we're paying $500 a month for, doesn't cover therapy for my autistic children. So $2000 for my 14yo's vision therapy -- out of pocket. $75 an hour for occupational therapy -- out of pocket. $55 an hour for speech therapy -- out of pocket.

 

We need major health care reform, and we need it now, and that's how we'll help children with autism.

 

Obama will not sit up centers for excellence for autism. As I posted to Asta we were looking a low functioning what appeared to be classic Kanner's with our oldest son. I could post similar amounts of money spent for speech, OT, Vision therapies. In fact it ruined us financially for probably a long long time. We have the mortgage we have because we used the equity in a house that was paid off to pay for therapies. We went the Dr. Chez route because our sons had LKSv Landau Kleffner Syndrom variant which was triggered by the cell wall in the p in the DPT shot. Because of Dr. Chez and some of the work other parents did the p in the DPT shot now has the cell wall almost totally removed. So that there are now hopefully few kids with LKSv because of a vaccination.

 

Do you really think if we have health care like they have in Canada you will get the best therapies? I think there will be waiting lists and kids on the spectrum especially those under age 6 can not afford to wait.

 

I could have a very lengthy discussion with you about medical research and the fact that autism is just an umbrella word for what is probably many diseases. As part of CAN and because I was a parent of kids and Aunt of kids on the spectrum I have read a ton of medical studies not just what other folks wrote about the studies and we as a family have been a part of several studies. I have no Idea who Jenny McCarthy nor have I kept up with the research since just before 9/11. When I kept up tho I did not just read things that have been watered down by others but the real studies and did the math when I had to.

 

I asked that this not go into an Obama thing or McCain thing. Obama did not say a word about Autism or what he would do about it. Please be respectful of my request.

Edited October 16, 2008 by RebeccaC

[Tammyla]

:grouphug:

[Merry]

on the extreme end of autism. At thirty years old, he functions on a four year old level even though mentally he's probably on a junior or high school level. His parents still have to help him take daily showers and they cannot leave him at home alone. I would say there this is a definite need for a cure for people like him.

[RebeccaC]

I'm obviously not A, but I think I understand where she is coming from.

 

Not everyone views their differences as "diseases." There are many people on the autism spectrum who don't like the label of 'disease.' They simply do not feel that way about themselves (or about their loved ones who may be on the spectrum).

 

Over time, there have been many differences that got labeled as 'disease.' They may be diseases to some, but not to everyone. It is a matter of perception. Some people do not choose to be 'the disease,' but instead embrace their differences as part of the uniqueness that is who they are.

 

Asta, if I've overstepped, I apologize. I'm pretty passionate about the value of uniqueness, so I couldn't help myself from jumping in. :)

 

Well your ignorance show here my son was classic autism not a mild form that allows folks to be slightly odd yet still function in society. There are people with autism who even now are institutionalize because they can not speak or stop stimming because they can not function on their own. I really don't think that aspies should be lumped in with the folks who have the hard core autism and that is what our family delt with, a totally non verbal, low functioning, child who was injurious to himself and to his brother. The reason to institutionalize him at age 3 was the fear by the doctors that he would harm himself or kill his 18 month old brother.

 

I really should not have to defend my self in this to any of y'all but I will. You have overstep writing this to me......

Edited October 16, 2008 by RebeccaC

[Crissy]

It is always wonderful when an issue so dear to you gets much needed attention.

 

:grouphug:

[RebeccaC]

As Obama pointed out, under McCain there would be tremendous cuts in money for research for diseases such as autism, while he wants more funding for such research.

 

Mom to All, I fully expected you to rain on my parade :D and had an answer for ya. It is all about moving money around and spending it better. If he and Palin are passionate about it they will move money around and find a way. The NIH gets tons of money for all kinds of things and one thing I did was try and get them to move money to autism research or spend the money they had earmarked for autism in better studies than how long a child spun things around or rocked. Lots of money was spent wasted on stupid useless studies.

 

There was a time when I knew each study being done by the NIH on Autism. I knew personally most of the key researchers in the field and mc'd more than one medical conference dealing with Autism. I stopped following so closely just be fore 9/11 because I no longer needed to.

Edited October 16, 2008 by RebeccaC

[RebeccaC]

Hey - I have no idea, either!!! :001_smile:

 

Well I won't bend your arm one way or another ;) Just glad to call you friend.

[RebeccaC]

I agree that your and your son's Asperger diagnosis is a contributing factor to what makes you "you" and that it is a considerable influence to your personality and individualism.

 

However, and I hope you agree with this point, there are many children unable to properly function in society in order to live independently. If there is any way to cure autism I sincerly hope we get it. I do not want to see other children live the life lived by my cousin, who was unable to be independent his entire life. He had limited communication and social skills, no marketable job skills, and couldn't properly function without someone overseeing him daily. He died two years ago from cancer.

 

I think we are to embrace our abilities and know they are what makes us special and unique. If we can open the doors of a mental prison to some in order to allow them to reach greater heights, we should pursue it. If we are unable to open the door to each one, we should love those living in their own place. Searching for a cure is not a method to change the underlying character of a person, just to give them more tools at their disposal to use to the benefit of themselves, their families, and society in general.

 

Stacie--mom to a "cured" child on the spectrum

 

:iagree:

[RebeccaC]

Look y'all whether you hate McCain and love Obama or vs a versa if you have child on the spectrum the fact that Autism was brought up during a presidential debate should be good news! When I first started down this path few folks had heard of Autism and NO ONE in the government really cared. This is progress! Look past your partisanship and be glad that folks who might have real power are talking about it.

 

That for me was celebration time.

[hsmamainva]

I agree with you there, Rebecca. It's high time that the folks in Washington paid attention to this issue. Autism needs more money period. More money for therapy for those who are affected by it, and more money for research into causes and cures. (That would also keep out those folks who are only out there to make money from "snake oil cures"...and they are out there..making money off of hurting families who love their children and are left with no other option)

 

And, for those who missed it the debate....Here’s what McCain said about autism (go here for a transcript of the debate from the New York Times - http://elections.nytimes.com/2008/president/debates/transcripts/third-presidential-debate.html)

 

...............

 

And by the way, [sarah Palin] also understands special-needs families. She understands that autism is on the rise, that we got to find out what’s causing it and we’ve got to reach out to these families and help them and give them the help they need as they raise these very special needs children.

 

She understands that better than almost any American that I know. I’m proud of her and that she has ignited our party and people all over America that have never been involved in the political process. And I can’t tell you how proud I am of her and her family. Her husband’s a pretty tough guy, by the way, too.

 

Obama responded:

 

I do want to just point out that autism, for example, or other special needs will require some additional funding if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about. And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of — the use of the scalpel that we want to make sure that we’re funding some of those programs.

 

Later in the debate, McCain said:

 

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children, precious children who have autism.

 

Sarah Palin knows about that better than most. And we’ll find –and we’ll spend the money, research to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

[Audrey]

Well your ignorance show here my son was classic autism not a mild form that allows folks to be slightly odd yet still function in society. There are people with autism who even now are institutionalize because they can not speak or stop stimming because they can not function on their own. I really don't think that aspies should be lumped in with the folks who have the hard core autism and that is what our family delt with, a totally non verbal, low functioning, child who was injurious to himself and to his brother. The reason to institutionalize him at age 3 was the fear by the doctors that he would harm himself or kill his 18 month old brother.

 

I really should not have to defend my self in this to any of y'all but I will. You have overstep writing this to me......

 

 

First of all... I didn't write that to YOU, I wrote in response to the post I quoted, which was NOT yours and was merely a sub-thread of your original post anyway. And second of all I was not addressing anything other than what Asta had mentioned which is Asperger's and SOME people's perceptions of that.

 

You are getting defensive because it is a hot issue for you, and I don't believe you are reading half of the comments in any context but rather in a personal way when they are not directed as such.

 

I did not ask you to defend yourself. I wasn't talking to you or your issue at all. So step off a minute and breathe before you go jumping to assume my intentions, which -- again I say -- were not even directed to you. At all.

Edited October 16, 2008 by Audrey

[Audrey]

But why use the label on yourself at all? Why not just be unique without the label? My own personal opinion is that there are many people who have been labeled are simply different and unique. So I'm wondering why, if you view something as part of your essence, why you'd use a label on it at all.

 

 

Welll.... you see, I can't answer that. I was just expressing something mentioned in Asta's post. Her reasons for using any labels are her own.

[RebeccaC]

First of all... I didn't write that to YOU, I wrote in response to the post I quoted, which was NOT yours and was merely a sub-thread of your original post anyway. And second of all I was not addressing anything other than what Asta had mentioned which is Asperger's and SOME people's perceptions of that.

 

You are getting defensive because it is a hot issue for you, and I don't believe you are reading half of the comments in any context but rather in a personal way when they are not directed as such.

 

I did not ask you to defend yourself. I wasn't talking to you or your issue at all. So step off a minute and breathe before you go jumping to assume my intentions, which -- again I say -- were not even directed to you. At all.

 

Yes, you did address Asta who in her own way attacked what I posted and your response was a support for Asta's post. Folks like Asta and who feel like Asta take the focus off of the folks who have severe forms of Autism. They sometimes give the impression that autism is not all that bad and is just uniqueness or oddness and nothing should be done to make the lives of those suffering with more severe forms better. In your reply to Asta you helped to solidify that misconception so I replied to you, sub thread or not.

 

So, yes you hit a hot button with me. Asta and her child are lucky, blessed they can speak and function in the world but they should not speak for those who cannot and she should have known better. I did not use the word Asperger in my post at all. I used the more severe word Autism which really is not as similar to Autism as popular myth would have folks believe.

[Heather in the Kootenays]

One sounds similar to your son, the other is much higher functioning but will likely never have the skills to be independent.

 

I have a small idea of the difficulties you face so :grouphug::grouphug:

 

I wish there was more I could do for moms in your situation.

[Jenny in Atl]

I wonder how he will rain Palin in on this... As a mom of a daughters with genetic conditions in which this research might add in the discovery of a cure, I'm all for stem cell research. I know many of you are not.

 

"John McCain reaffirmed his support for federal funding of embryonic stem cell research on Monday -- in direct opposition to his party's agreed-upon official policy on the matter.

"While I support federal funding for embryonic stem cell research, I believe clear lines should be drawn that reflect a refusal to sacrifice moral values and ethical principles for the sake of scientific progress," McCain wrote in a response to a questionnaire released Monday by Science Debate 2008, a broad coalition of scientists and engineers.

The Republican party platform, adopted during its convention earlier this month, opposes embryonic stem cell research, preferring scientists to work with stem cells derived from other sources."

 

http://blog.wired.com/27bstroke6/2008/09/as-president-jo.html

[hsmamainva]

Yes, you did address Asta who in her own way attacked what I posted and your response was a support for Asta's post. Folks like Asta and who feel like Asta take the focus off of the folks who have severe forms of Autism. They sometimes give the impression that autism is not all that bad and is just uniqueness or oddness and nothing should be done to make the lives of those suffering with more severe forms better. In your reply to Asta you helped to solidify that misconception so I replied to you, sub thread or not.

 

So, yes you hit a hot button with me. Asta and her child are lucky, blessed they can speak and function in the world but they should not speak for those who cannot and she should have known better. I did not use the word Asperger in my post at all. I used the more severe word Autism which really is not as similar to Autism as popular myth would have folks believe.

 

I can understand this as well, Rebecca!

 

My 14 year old has high functioning autism (although they wouldn't classify it as Asperger's because he did have some language regression -- i.e., stopped talking from the age of 1 1/2 until age 4). He will probably do all the "traditional things" that children do - drive a car, hold a job, live independently. Not sure about college, as he does have some learning disabilities.

 

My 6 year old, on the other hand, has many more challenges. Academically, she's doing very well and she's working at grade level. Language-wise, she's more around a 3 year old level. Behavior-wise, she's still at a 2 year old level. We have to watch her constantly (or have one of her siblings do it) because she'll get into everything if she's left alone. She'll be 7 in January and she still isn't potty-trained...and we know that may not happen for years...if at all. We cannot see her living independently, although we try to be hopeful. (We've already had a talk with our oldest, who will be 18 in April, and we're going to be changing our will to give her custody of our youngest daughter, should anything happen to us. None of our family members could handle her, to be quite honest. So she knows that she will likely be caring for her sister for the rest of her life).

 

So, yes, I understand about having children on the spectrum who are more than just 'quirky'.

[RebeccaC]

I wonder how he will rain Palin in on this... As a mom of a daughters with genetic conditions in which this research might add in the discovery of a cure, I'm all for stem cell research. I know many of you are not.

 

"John McCain reaffirmed his support for federal funding of embryonic stem cell research on Monday -- in direct opposition to his party's agreed-upon official policy on the matter.

"While I support federal funding for embryonic stem cell research, I believe clear lines should be drawn that reflect a refusal to sacrifice moral values and ethical principles for the sake of scientific progress," McCain wrote in a response to a questionnaire released Monday by Science Debate 2008, a broad coalition of scientists and engineers.

The Republican party platform, adopted during its convention earlier this month, opposes embryonic stem cell research, preferring scientists to work with stem cells derived from other sources."

 

http://blog.wired.com/27bstroke6/2008/09/as-president-jo.html

 

Dh has an uncle who is a MD he and we looked into stem cell research in 99, including embryonic. I said NO to fetal stem cells! Uncle did not understand but it comes down to two things, one is life and the other is that they are having much better results with fewer side effects with adult stem cells and umbilical cord stem cells. I would wager that Palin is not in favor of fetal stem cell research and I doubt that McCain will move her on that. I would not have voted for McCain if he had not added Palin to the ticket because of his stand on stem cells.

 

Thing is is Autism is like a limp all kinds of things cause a limp but all that most folks see is the limp. What is a limp a behavior. Autism is dx on a set of behaviors not on any blood work or x rays or......

 

My boys were positive for brain antibodies that were attacking their brains, which caused sleep seizures in the area of the brain where language is. But before my oldest was tested for those antibodies he had a dx of Autism based on behavior alone. The antibodies were treatable with drugs not every kids with Autism has what my boys have. The prevailing thought among medical researchers in the late 90s and early 80s was that there are many causes for Autism and there will be be as many cures as there are causes.

 

My niece has the same kind of Autism my sons have the problem is tho the female brain does not respond as well to the drugs that helped to heal my boys. She is 17 now has more than one seizure disorder and is still Autistic and dyslexic. So much for the feminist idea that there is no differences between male and female.

 

Any way like I posted this is progress when Autism is brought up during a presidential debate.

[RebeccaC]

I can understand this as well, Rebecca!

 

My 14 year old has high functioning autism (although they wouldn't classify it as Asperger's because he did have some language regression -- i.e., stopped talking from the age of 1 1/2 until age 4). He will probably do all the "traditional things" that children do - drive a car, hold a job, live independently. Not sure about college, as he does have some learning disabilities.

 

My 6 year old, on the other hand, has many more challenges. Academically, she's doing very well and she's working at grade level. Language-wise, she's more around a 3 year old level. Behavior-wise, she's still at a 2 year old level. We have to watch her constantly (or have one of her siblings do it) because she'll get into everything if she's left alone. She'll be 7 in January and she still isn't potty-trained...and we know that may not happen for years...if at all. We cannot see her living independently, although we try to be hopeful. (We've already had a talk with our oldest, who will be 18 in April, and we're going to be changing our will to give her custody of our youngest daughter, should anything happen to us. None of our family members could handle her, to be quite honest. So she knows that she will likely be caring for her sister for the rest of her life).

 

So, yes, I understand about having children on the spectrum who are more than just 'quirky'.

 

 

Well, ya know, I wish it wasn't so! I wish there was no such thing as Autism :grouphug: I hope and I pray that they find more treatments and cures. The only way they will tho is if they begin to talk about it at the highest levels of government. It is ok to say we accept personality oddness it is another to say we accept LD issues and low functioning as OK for any child or adult.

[Stacie]

My boys were positive for brain antibodies that were attacking their brains, which caused sleep seizures in the area of the brain where language is. But before my oldest was tested for those antibodies he had a dx of Autism based on behavior alone. The antibodies were treatable with drugs not every kids with Autism has what my boys have. The prevailing thought among medical researchers in the late 90s and early 80s was that there are many causes for Autism and there will be be as many cures as there are causes.

 

My niece has the same kind of Autism my sons have the problem is tho the female brain does not respond as well to the drugs that helped to heal my boys. She is 17 now has more than one seizure disorder and is still Autistic and dyslexic. So much for the feminist idea that there is no differences between male and female.

 

 

 

Rebecca, I haven't heard your story so if you've posted it before, I apologize. Did the treatment cure your son and he was not institutionalized? Are both of your boys still diagnosed as autistic or have they lost the specific behaviors?

 

My son was diagnosed in January, but has since lost most of his behaviors that earned him the dx. I'm always reading, researching, and learning, and I like to share information with other parents I encounter in my situation. :)

[RebeccaC]

Rebecca, I haven't heard your story so if you've posted it before, I apologize. Did the treatment cure your son and he was not institutionalized? Are both of your boys still diagnosed as autistic or have they lost the specific behaviors?

 

My son was diagnosed in January, but has since lost most of his behaviors that earned him the dx. I'm always reading, researching, and learning, and I like to share information with other parents I encounter in my situation. :)

 

I have not posted here about it much before today. My son is no longer on the spectrum but my niece is. When he was 3 turning 4 we had two unconnected docs tell us to institutionalize him, we did not we got a third opinion. Which made all the difference in the world. We caught my younger son very early on and started treatment quickly so he did not present as low functioning.

 

Dr. Chez has a new book out I think some of my sons EGGs are in that book. He was part of several medical studies. My boys have lost all autistic behavior. They are older now. We did several years of treatment with Depakote and Prednisone. Not every child on the spectrum has what my boys and niece have but it is something that should be ruled out with a 24 hour EEG using DigiTrace equipment. Our doc has moved to CA Sacramento. Do a google search and you should find him. He had several articles on line for free, solid medical studies. His book is Autism and Its Medical Management: A Guide for Parents and Professionals by Michael G., M.D. Chez and Amazon has it.

 

If you have nay other questions please feel free to post or do the pm thing.

Edited October 17, 2008 by RebeccaC

[asta]

I'm obviously not Asta, but I think I understand where she is coming from.

 

Not everyone views their differences as "diseases." There are many people on the autism spectrum who don't like the label of 'disease.' They simply do not feel that way about themselves (or about their loved ones who may be on the spectrum).

 

Over time, there have been many differences that got labeled as 'disease.' They may be diseases to some, but not to everyone. It is a matter of perception. Some people do not choose to be 'the disease,' but instead embrace their differences as part of the uniqueness that is who they are.

 

Asta, if I've overstepped, I apologize. I'm pretty passionate about the value of uniqueness, so I couldn't help myself from jumping in. :)

 

Thank you for this.

 

As to the poster(s) who inquired about me "labeling" myself: it would have been rather silly for me to have written my post and made absolutely no mention, whatsoever, to Asperger's, wouldn't it?

 

Go around this board and see if you see a single other post of mine that is signed off as "Aspie Asta"; there isn't one. I did that solely to get my point across.

 

The autism spectrum, of which Asperger's is a part (no, Asperger's isn't necessarily better, worse, or "light") is simply that: a spectrum. Along that spectrum is an array of challenges due to having a brain that is wired differently than a neuro-typical person. Some of those challenges are intellectual, some are emotional, and some are physical. A large portion of those challenges cease to be such when one ceases trying to become someone one is not; ie, a neuro-typical.

 

I think differently. I can either "rail against the machine" in frustration, stimming in a manic attempt to calm myself, or I can continue "thinking outside of the box" finding the solutions that other people can't, and live in my comfort zone.

 

I find it appalling anyone would assume that because someone was "high-functioning" intellectually, they had it "easy". I have faced myriad health issues, as has my son. They are weird "how did you get THAT" things that no one can fix. When I was a child, no one received Asperger's diagnoses; I was just the weird kid. It wasn't easy growing up. My own experiences have played a major role in why I homeschool.

 

I am a mother. I can understand another mother's frustration in not getting proper care for her child. I commented in my post that I was glad the OP was reaching her dream. I am also on the other side of the equation. I am one of the people CAN wants to cure. I don't want to be cured. My son doesn't want to be cured. Why? Because we don't have a disease - we're just made differently, from the ground up. And we're OK with that. There is a whole community of us in the world who are OK with that, believe it or not.

 

 

asta

Edited October 17, 2008 by asta
subject/verb agreement

[hsmamainva]

CNN just had an article this morning about Virginia!!

 

There's a bill before the General Assembly (which will reconvene in January) that will require insurance companies to cover the cost of therapy for treating autism, up to $36,000 per year!! :w00t:

 

Our youngest daughter's speech and occupational therapy costs us around $20K per year, so this would be VERY VERY helpful!!!!

 

If anyone reading this thread lives in Virginia, and would like to write to the members of the General Assembly, it's House Bill 83.

 

I'm sooo very hopeful this will pass!!! We have health insurance, but it doesn't cover therapy for autism and this would help our family tremendously!!!

 

Here's the article on CNN about the Virginia bill:

 

http://www.cnn.com/2008/HEALTH/conditions/10/17/autism.insurance/index.html

 

Here's a link to the legislation itself:

 

http://leg2.state.va.us/DLS/H&SDocs.NSF/682def7a6a969fbf85256ec100529ebd/a61f58940da54611852574d7004e4b27?OpenDocument

[Stacie]

CNN just had an article this morning about Virginia!!

 

There's a bill before the General Assembly (which will reconvene in January) that will require insurance companies to cover the cost of therapy for treating autism, up to $36,000 per year!! :w00t:

 

Our youngest daughter's speech and occupational therapy costs us around $20K per year, so this would be VERY VERY helpful!!!!

 

If anyone reading this thread lives in Virginia, and would like to write to the members of the General Assembly, it's House Bill 83.

 

I'm sooo very hopeful this will pass!!! We have health insurance, but it doesn't cover therapy for autism and this would help our family tremendously!!!

 

Here's the article on CNN about the Virginia bill:

 

http://www.cnn.com/2008/HEALTH/conditions/10/17/autism.insurance/index.html

 

Here's a link to the legislation itself:

 

http://leg2.state.va.us/DLS/H&SDocs.NSF/682def7a6a969fbf85256ec100529ebd/a61f58940da54611852574d7004e4b27?OpenDocument

 

 

We had a similar law passed earlier this year. I followed it closely. My son is finished with therapy paid out of our pocket, but it's nice to know that the coverage is available if I should need it again.

 

A bit of unsolicited advice. Keep your children enrolled in therapy and stay in touch with your insurance. If the therapists are approved providers for your insurance you should have no problem. Around here when the law was signed, the therapists in the state suffered an onslought of new clients and waiting lists of 6+ months developed almost overnight. Even those already receiving therapy had to change therapists join a waiting list if their current therapist was not a provider for their insurance company.

 

I'm keeping my fingers crossed that it passes for you!!

[RebeccaC]

Thank you for this.

 

As to the poster(s) who inquired about me "labeling" myself: it would have been rather silly for me to have written my post and made absolutely no mention, whatsoever, to Asperger's, wouldn't it?

 

Go around this board and see if you see a single other post of mine that is signed off as "Aspie Asta"; there isn't one. I did that solely to get my point across.

 

The autism spectrum, of which Asperger's is a part (no, Asperger's isn't necessarily better, worse, or "light") is simply that: a spectrum. Along that spectrum is an array of challenges due to having a brain that is wired differently than a neuro-typical person. Some of those challenges are intellectual, some are emotional, and some are physical. A large portion of those challenges cease to be such when one ceases trying to become someone one is not; ie, a neuro-typical.

 

I think differently. I can either "rail against the machine" in frustration, stimming in a manic attempt to calm myself, or I can continue "thinking outside of the box" finding the solutions that other people can't, and live in my comfort zone.

 

I find it appalling anyone would assume that because someone was "high-functioning" intellectually, they had it "easy". I have faced myriad health issues, as has my son. They are weird "how did you get THAT" things that no one can fix. When I was a child, no one received Asperger's diagnoses; I was just the weird kid. It wasn't easy growing up. My own experiences have played a major role in why I homeschool.

 

I am a mother. I can understand another mother's frustration in not getting proper care for her child. I commented in my post that I was glad the OP was reaching her dream. I am also on the other side of the equation. I am one of the people CAN wants to cure. I don't want to be cured. My son doesn't want to be cured. Why? Because we don't have a disease - we're just made differently, from the ground up. And we're OK with that. There is a whole community of us in the world who are OK with that, believe it or not.

 

 

asta

 

Asta,

 

I understand that you have had some difficulties but when you and others on the high end are vocal about not having a disease and not needing treatment you can take the focus off of those who do have a disease and have no voice and no hope of functioning in the world. The children of the folks who started CAN are all non-verbal low, functioning, severely autistic and that has almost always been their aim to help the most severe. Not one of the founding member had an aspie child. They might have asked you to join the gene studied but y'all were never the focus. I know the founders of CAN.

 

You have the luxury of not wanting to be cured because you can function in a semi-normal manner, what of the 30 year old non verbal, diaper wearing adult, who spends a good part of their day stimming?

 

What about your grandkids or great grandkids who have a higher chance of being non verbal than the rest of the public do you want no cure for them because you and your son can function?

 

Go and be OK with who you are but do not in your speaking out make it hard to get funding for those who may not be ok in their mute world lock in institutions once mom and dad are too old to care for them. Or form a public misconception that it is no big deal to be on the spectrum that you and others are ok with who you are. You and the other high end folks who can speak should watch how you speak, so that in your speaking, you do not make choices for those who can not.

 

Your description of Autism is light when it comes to the medical side and what it is and is not and how brains are wired and not. My choice for my son was that he not live with the difficulties you embrace and thank God he does not! I know kids who were mute at 3 and 4 who did medical treatment different from my son who also are on longer on the spectrum and functioning normally. Your embrace of you difficulties is an adult choice, acceptance of what you can not change but when a brain is young there is hope! Do Not steal that hope from other parents who desperately want to spare their kids the pain you say your have experienced by being overly vocal about not wanting to be cured and how like is ok and writing things like CAN wants to cure you when NO one is trying to cure you.

[RebeccaC]

 

I am a mother. I can understand another mother's frustration in not getting proper care for her child. I commented in my post that I was glad the OP was reaching her dream. I am also on the other side of the equation. I am one of the people CAN wants to cure. I don't want to be cured. My son doesn't want to be cured. Why? Because we don't have a disease - we're just made differently, from the ground up. And we're OK with that. There is a whole community of us in the world who are OK with that, believe it or not.

 

 

asta

 

Asta, my last post was a bit harsh and I would like to explain just who the people were who started CAN and why they started it. It was a set of parents in IL and CA both with low functioning kids, and then 3 sets of parents in IL all with moderate to low functioning kids. Our goal was to find a cure for our kids and if not a cure then a cause and if not a cause then the genes responsible. Never were Aspies on the table. The founders in CA had a child with The LKS seizure pattern but that child had other issues like CP the folks in IL had a child with gut issues. There is a ton of solid research that shows that many forms of Autism is disease based. I have read many of those studies. Most of it is not in the public domain but I read a lot of because CAN gave out grants for research and because I wanted to help my sons and other young children with Autism. There are also plenty of studies that show it is the result of a genetic predisposition and vaccine damage, not just thermisol either but that is for another discussion.

 

My sons were on huge doses of meds and their EEGs changed, antibody counts dropped, they gained language, their SI issues cleared up, and social skills were developed and at that point the only treatment they were getting was medical and mom therapy so it was not the results of OT or speech therapist. We were some of the first to be get the treatment when it left research /study stage. I kept good records and charted every gain and it was incredible.

 

The docs who had recommended institutionalization reassessed my older son after two years of treatment and they could not believe the difference. These same docs who had advise me that Autism was just the way my son was wired and that Dr. Chez was a snake oil doc not to go to him. They apologised profusely to me two years later.

 

Asta, If I had bought the line that Autism is just about the way folks are wired my son would, at 16, be in a state institution brain deaf, mute, most likely naked due to the severity of his SI issues, and twirling things or rocking. Right now he is a leader in his youth group, a leader in his scout troop, a cub scout counselor, and our house is the cool house to be at for all the male teens within a 3 block radius. A large group of teen boys who hang out here because of my oldest son.

 

The key is to get treatment before a child turns 6. The younger the better. As an adult the brain is wired and there is little that can be done and for that I am sorry! However I know that you can and will have a good life because you are in a way blessed. You can function in the world. You mom does not have to worry about where she will have to place you once she is to old and will you be abused in the place she puts you. There are tho a lot of moms who worry about that and for them and their children my heart breaks.

 

I worry about my grandkids and great grandkids and for them I want better and for all the children who will not be able to live independent lives I want something better than it is just the way you are wired. Especially when there is was so much research that point to other factors, factors that could be, might be changed if caught early enough. Right now all I can do is pray that attitudes in our governement and medical world to change, for the kids who were my sons playmates, for my niece, and for the sons of friends who kids were too young to be my boys plamates that God would somehow someway move in their lives and most of all for protection for those kids and encouragement and strength for their moms and dads. I wish I could do more!

 

Please forgive my harshness and let us be friends.

 

Blessings,

Rebecca

Edited October 18, 2008 by RebeccaC

[hsmamainva]

I agree with you again, Rebecca. We need more studies of children with autism, and by independent researchers (not subsidized by the pharmaceuticals).

 

We were completely convinced that our oldest son's autism was caused by vaccines because he stopped talking at 15 months, 5 days after his MMR vaccine, and didn't speak again until he was 4 1/2 (other than echolalia, repeating memorized phrases, etc.)

 

My youngest daughter has never been vaccinated, and she still has autism .. and a more severe form of autism than my oldest son (as I related in an earlier post).

 

Genetically predisposed? Definitely!!!

 

Also there was another study that came out recently that noted that if the father of a child was over 40 at the time of conception, there was a significantly higher chance that the child would have autism (and my hubby was 43 when I got pregnant with my youngest). So I think there could be something to this as well...and would at least partially explain the reasons for the rise of autism within the last ten years, as families are having children later and later in life, due to advances in fertility treatments for older moms (and dads).

 

I would love to read more about what helped your children!! My daughter's never had an EEG and I'm curious to see if it might help her in some way (even though you mentioned in another post that it was less effective with girls).

 

I know that for my daughter, her sensory issues have decreased a hundredfold since she started occupational therapy a year and a half ago (before then, we couldn't even take her out in public because her sensory system would just go on 'overload meltdown'. Now we can take her out to restaurants, take her shopping ... she still can't handle shopping malls, but she can handle places like Wal-Mart and grocery stores, and we've been on short vacations numerous times -- so it's like having a completely new child!!)

 

What we had to handle before OT would curl your toes! (My dd had a passion for taking her diaper off at night and smearing the contents on the walls -- and this went on for YEARS. She no longer does this and OT was what helped more than anything else. Her therapist said that my dd was one of the worst cases of sensory integration dysfunction that she'd ever seen)

 

She still has some sensory issues, but they're not as significant as they once were (she doesn't like crowds, she can't wear tight pants, she doesn't like her hair brushed, etc.)

 

Her language issues affect her the most in her day to day life. She has trouble asking and answering questions. Her vocabulary is very good, but she has no concept whatsover about word order, so her sentences come out like "Grass the pumpkin is on the" instead of "The pumpkin is on the grass". Her therapist believes that it is definitely caused by something inside her brain, neurons missfiring, etc., so that caused my ears to perk up when you mentioned EEG's with your children.

 

Sorry this was so long, btw!!