Re: Imus on Autism

May 10, 2006

Missed the PSA - would love to know when and if the link is alive to watch it on the net'

Please advise

Thanks!

A Jeff's mom

From: EOHarm [mailto:EOHarm ] On Behalf Of jeffmillrunSent: Wednesday, May 10, 2006 10:54 AMEOHarm Subject: Re: Imus on Autism

I forgot to add my wife and I were both sobbing uncontrolably at the end of this PSA. We just added a few more tears to the buckets of tears we have already cried. THIS PSA IS AMAZING!!!> >> > The best PSA I have ever seen. Amazing!!> >>

May 10, 2006

I edited my original post because I thought of some additional

things:

> > > > > >

> > > > > > The best PSA I have ever seen. Amazing!!

> > > > > >

> > > > >

May 10, 2006

Great PSA. Searing tragedy.

And to think our government mandated all of this without testing.

And now denies with such ferocity that we get hysterical stories about non-existent bird flu pandemics in response so that noone has to admit/own up to their role in this iatrogenic holocaust.

Re: Imus on Autism

I edited my original post because I thought of some additional things:> > > > > >> > > > > > The best PSA I have ever seen. Amazing!!> > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

May 10, 2006

For the love of god, do we have to be so condescending? Of course parents need to stay involved and be our own advocates. However, you can not marginalize a group of people because they are paid that is how "real results" sometimes happen. Do you really think every lobbyist "has hands on passion and knowledge"?

Yet, obviously they can be very effective!

Right now so many of the stories on autism are of the feel good variety that make autism look like a bump in the road. This PSA was real and powerful. It addressed the danger, the financial stress , the stress on relationships, the isolation, the fears that we all have before we fall asleep, (if we get to) and the minute we wake up.

I for one cheered when said she won't accept that this is it for a generation of children ( or something to that extent, I was a puddle at that point.) That did not smell of a marketing machine.

I am not saying that Autism Speaks is our savior, I'm not saying as a parent, my job as advocate is any smaller. However, moving a boulder is easier with some momentum. And with out a doubt there is more momentum on our side with Autism Speaks then with the other "well-known " organizations NAAR, ASA, and CAN I am happy to say I'm jumping on the bandwagon.

From: EOHarm [mailto:EOHarm ] On Behalf Of J. KrakowSent: Wednesday, May 10, 2006 9:15 AMEOHarm Subject: Re: Imus on Autism

Regarding this PSA -I have not seen this but I am sure it is powerful. Just remember, however, that Autism Speaks is a great PR and marketing machine but not a real organization of parents. They have a paid staff of people - but not the hands on passion and knowledge that exists in a number of grassroots parent organizations. But they have no "Bandwagon." The heavy lifting has been done and will continue to be done by ordinary parents like us in our various organizations. Autism Speaks has not led that and I don't think they can nor should they. We need our own leaders - not mere public relations stunts. Any tangible accomplishment, especially the state thimerosal bans, the coalition for insurance coverage for autism in NY, the science initiatives and others has been done by ordinary parents. A PSA that is effective will help us, but real organization by parents can only be done by us, not by a marketing machine. We can use the marketing exposure - but that has to be followed by organizational structure and membership by parents with a real agenda that addresses our needs. Toothpaste joint ventures and celebrity marketing raises money, may raise "awareness" but does not drive home our issues in legislatures.So while I am glad that this PSA has appeared and I am eager to see it, let's keep our eye on the ball and not jump on a bandwagon that is a marketing engine and not a true organization of parents. Use the publicity it generates to make our points - that is no substitute for the hands on advocacy that we need to engage in.On May 10, 2006, at 8:21 AM, suzanne messina wrote:

Bobbie is right; this is the kind of PSA we need airing continuously. To feel the impact of this is unlike any other segment I have seen; not that it has not been done before, nut so many examples in such a short time....so much was covered .Behaviors, Finances, Dreams lost, Worries od the future...and all from theparents and children living it, not from reporters Is there a way we can get a copy of this, Bobbie, to present to legislators, educators, therapists, etc? For PAC, SPED meetings, and at committee hearings? MA, and other states, ae absolutely ready for this......Thanks, Suzanne Messina REAACH, MFVC, AO From: EOHarm [mailto:EOHarm ] On Behalf Of bobbie manningSent: Wednesday, May 10, 2006 7:22 AMEOHarm Subject: Re: Imus on Autism The best PSA I have ever seen. Amazing!!

May 10, 2006

Perfectly put Henry.

> > > > > > >

> > > > > > > The best PSA I have ever seen. Amazing!!

> > > > > > >

> > > > > >

May 10, 2006

got it right. It was a full spectrum of what we go through day to day.

One woman talked about how she felt guilty for not doing an updated list on all

of the supplements she gives everyday because no one else knows. The sleep

deprivation, fears, inadaquet school settings, all were done so effectively.

One of the women said the divorce rate is something like 80%. I went into the

kitchen sobbing while making lunch for the kids and told my husband that we're

in an uphill battle against the odds. -

>From: vdebold <vdebold@...>

>Date: Wed May 10 12:29:02 CDT 2006

>EOHarm

>Subject: Re: Imus on Autism

>Can someone who saw it recount what it showed?

>

>Thanks,

>Vicky

>

>> > > >

>> > > > The best PSA I have ever seen. Amazing!!

>> > > >

>> > >

May 10, 2006

wrote:

" I am not saying that Autism Speaks is our savior, I'm not saying as

a parent, my job as advocate is any smaller. However, moving a

boulder is easier with some momentum. And with out a doubt there is

more momentum on our side with Autism Speaks then with the

other " well-known " organizations NAAR, ASA, and CAN I am happy to

say I'm jumping on the bandwagon " .

- I agree with here. There is strength in numbers. I think

that one of the main issues in this whole debate is the huge amount

of fighing within the autism community. You have large groups of

people who can't stand each other and will fight AGAINST each other

for funding, etc. It's difficult to watch. I can speak from the

type 1 diabetes side of things. Everyone joins together for the

most part via the JDRF, they go to DC for funding, everyone holds

hands and tells their stories and they get funding. None of this

infighting. I understand where it comes from and I completely

understand that all these groups CANNOT possibly come together due

to completely different views about the vaccine/autism question

(amongst other issues) but the ones whose ideas/goals are in line

with each other need to reflect that strength better to

the " outsiders " . Just my opinion... I could be way off

Sue M.

>

May 10, 2006

The video shown on Imus will be on the Autism Speaks website soon.

It will probably be on this page, with their other 30 second PSA's.

http://www.autismspeaks.org/whatisit/ad_council_campaign.php

AS Homepage, click on Learn the Signs, then see the Ads.

> >> > > >

> >> > > > The best PSA I have ever seen. Amazing!!

> >> > > >

> >> > >

May 10, 2006

Bob fights the battle up front.

For example the very next guest on Imus, Senator Rick Santorum, was asked if he watched. He said "No, but I was told about it...." in a very cold tone of voice. He's the same guy a while back promised Imus that if Deirdre thinks she can turn the combating autistics bill into a thimerosal bill she can forget it. He guaranteed it will not pass.

Re: Imus on Autism

For the love of god, do we have to be so condescending? Of course parents need to stay involved and be our own advocates. However, you can not marginalize a group of people because they are paid that is how "real results" sometimes happen. Do you really think every lobbyist "has hands on passion and knowledge"?

Yet, obviously they can be very effective!

Right now so many of the stories on autism are of the feel good variety that make autism look like a bump in the road. This PSA was real and powerful. It addressed the danger, the financial stress , the stress on relationships, the isolation, the fears that we all have before we fall asleep, (if we get to) and the minute we wake up.

I for one cheered when said she won't accept that this is it for a generation of children ( or something to that extent, I was a puddle at that point.) That did not smell of a marketing machine.

I am not saying that Autism Speaks is our savior, I'm not saying as a parent, my job as advocate is any smaller. However, moving a boulder is easier with some momentum. And with out a doubt there is more momentum on our side with Autism Speaks then with the other "well-known " organizations NAAR, ASA, and CAN I am happy to say I'm jumping on the bandwagon.

From: EOHarm [mailto:EOHarm ] On Behalf Of J. KrakowSent: Wednesday, May 10, 2006 9:15 AMEOHarm Subject: Re: Imus on Autism

Regarding this PSA -I have not seen this but I am sure it is powerful. Just remember, however, that Autism Speaks is a great PR and marketing machine but not a real organization of parents. They have a paid staff of people - but not the hands on passion and knowledge that exists in a number of grassroots parent organizations. But they have no "Bandwagon." The heavy lifting has been done and will continue to be done by ordinary parents like us in our various organizations. Autism Speaks has not led that and I don't think they can nor should they. We need our own leaders - not mere public relations stunts. Any tangible accomplishment, especially the state thimerosal bans, the coalition for insurance coverage for autism in NY, the science initiatives and others has been done by ordinary parents. A PSA that is effective will help us, but real organization by parents can only be done by us, not by a marketing machine. We can use the marketing exposure - but that has to be followed by organizational structure and membership by parents with a real agenda that addresses our needs. Toothpaste joint ventures and celebrity marketing raises money, may raise "awareness" but does not drive home our issues in legislatures.So while I am glad that this PSA has appeared and I am eager to see it, let's keep our eye on the ball and not jump on a bandwagon that is a marketing engine and not a true organization of parents. Use the publicity it generates to make our points - that is no substitute for the hands on advocacy that we need to engage in.On May 10, 2006, at 8:21 AM, suzanne messina wrote:

Bobbie is right; this is the kind of PSA we need airing continuously. To feel the impact of this is unlike any other segment I have seen; not that it has not been done before, nut so many examples in such a short time....so much was covered .Behaviors, Finances, Dreams lost, Worries od the future...and all from theparents and children living it, not from reporters Is there a way we can get a copy of this, Bobbie, to present to legislators, educators, therapists, etc? For PAC, SPED meetings, and at committee hearings? MA, and other states, ae absolutely ready for this......Thanks, Suzanne Messina REAACH, MFVC, AO From: EOHarm [mailto:EOHarm ] On Behalf Of bobbie manningSent: Wednesday, May 10, 2006 7:22 AMEOHarm Subject: Re: Imus on Autism The best PSA I have ever seen. Amazing!!

May 10, 2006

My father saw it this a.m. before he came for a visit today. He said we

should be counting our blessings after seeing what he saw (Noah is

HFA/AS). It was very disturbing to him, but in a good way. I see and

hear what other parents are dealing with, but he doesn't. The only

" autism " he knows is the JMack kind, my son.

Becky

> It was over twenty minutes long.

> Highlighted four mothers w/ their autistic children (3 boys 1 girl-

> one of the mothers was ).

May 10, 2006

He then patted himself on the back and said HE was the Senator that

sponsored the Combatting Autism Act. He and he alone....

Seeking credit where it may not be due.

His tempo was more upbeat today for CAA. Of course, sounds like he's

fighting for his life to get re-elected to his senate seat.

Bullshit politicians will say anything when necessary.

>

> Bobbie is right; this is the kind of PSA we need

airing continuously. To feel the impact of this is unlike any other

segment I have seen; not that it has not been done before, nut so

many examples in such a short time....so much was

covered .Behaviors, Finances, Dreams lost, Worries od the

future...and all from the

> parents and children living it, not from reporters

>

> Is there a way we can get a copy of this, Bobbie, to present

to legislators, educators, therapists, etc? For PAC, SPED meetings,

and at committee hearings? MA, and other states, ae absolutely

ready for this......Thanks, Suzanne Messina REAACH, MFVC, AO

>

> From: EOHarm [mailto:EOHarm ]

On Behalf Of bobbie manning

> Sent: Wednesday, May 10, 2006 7:22 AM

> EOHarm

> Subject: Re: Imus on Autism

>

> The best PSA I have ever seen. Amazing!!

>

May 10, 2006

But Santorum is right.

You may not like Santorum's politics for any number of reasons, but he does tell the truth (on a relative scale compared to all of the other weasels).

So don't trash/kill Santorum- he's only the messenger. And he is trying to get the watered down version passed- without the thimerosal causation fund attached.

Congress doesn't/can't do much- but they certainly will dig their heels in on this one- to the deteriment of the combatting autism act not passing.

The Republicans will simply not allow public funding to be used to establish causation in the autism epidemic. If that (establishing causation) occurs, it will have to be with private funding and private research (university grants). But even if causation is established by private funding, the medical institutions/scientific agencies will try to frustrate the causation purpose- some help may come from the European/Canadian/Australian/Japanese (obviously not British) scientific communities. And then the real battle will begin. At some point the deniers will collapse because they will not put their entire credibility at risk. That's why we're starting the see the thaw in the AAP with the publication of Dr. Stoller's letter in the Pediatrics Journal. The position the AAP has taken with respect to the flu vaccine is too stupid for words. And they know it.

Public funding to establish causation will not go anywhere. Especially not with the extremely strong historical Bush family ties to the one corporation which will go down if causation is ever established. You think Bush '41 will allow that, given his relationship to the Quayle family. No way.

Given those ties, '43 would rather have the CDC ginning up bird flu hysteria, despite its laughability (it reminds one of a bad Wes Craven movie), rather than get to the truth.

Even if his poll numbers tank even further. As long as you're above zero, you're still alive, I always say.

The Bushes are nothing if not loyal.

Re: Imus on Autism

For the love of god, do we have to be so condescending? Of course parents need to stay involved and be our own advocates. However, you can not marginalize a group of people because they are paid that is how "real results" sometimes happen. Do you really think every lobbyist "has hands on passion and knowledge"?

Yet, obviously they can be very effective!

Right now so many of the stories on autism are of the feel good variety that make autism look like a bump in the road. This PSA was real and powerful. It addressed the danger, the financial stress , the stress on relationships, the isolation, the fears that we all have before we fall asleep, (if we get to) and the minute we wake up.

I for one cheered when said she won't accept that this is it for a generation of children ( or something to that extent, I was a puddle at that point.) That did not smell of a marketing machine.

I am not saying that Autism Speaks is our savior, I'm not saying as a parent, my job as advocate is any smaller. However, moving a boulder is easier with some momentum. And with out a doubt there is more momentum on our side with Autism Speaks then with the other "well-known " organizations NAAR, ASA, and CAN I am happy to say I'm jumping on the bandwagon.

From: EOHarm [mailto:EOHarm ] On Behalf Of J. KrakowSent: Wednesday, May 10, 2006 9:15 AMEOHarm Subject: Re: Imus on Autism

Regarding this PSA -I have not seen this but I am sure it is powerful. Just remember, however, that Autism Speaks is a great PR and marketing machine but not a real organization of parents. They have a paid staff of people - but not the hands on passion and knowledge that exists in a number of grassroots parent organizations. But they have no "Bandwagon." The heavy lifting has been done and will continue to be done by ordinary parents like us in our various organizations. Autism Speaks has not led that and I don't think they can nor should they. We need our own leaders - not mere public relations stunts. Any tangible accomplishment, especially the state thimerosal bans, the coalition for insurance coverage for autism in NY, the science initiatives and others has been done by ordinary parents. A PSA that is effective will help us, but real organization by parents can only be done by us, not by a marketing machine. We can use the marketing exposure - but that has to be followed by organizational structure and membership by parents with a real agenda that addresses our needs. Toothpaste joint ventures and celebrity marketing raises money, may raise "awareness" but does not drive home our issues in legislatures.So while I am glad that this PSA has appeared and I am eager to see it, let's keep our eye on the ball and not jump on a bandwagon that is a marketing engine and not a true organization of parents. Use the publicity it generates to make our points - that is no substitute for the hands on advocacy that we need to engage in.On May 10, 2006, at 8:21 AM, suzanne messina wrote:

Bobbie is right; this is the kind of PSA we need airing continuously. To feel the impact of this is unlike any other segment I have seen; not that it has not been done before, nut so many examples in such a short time....so much was covered .Behaviors, Finances, Dreams lost, Worries od the future...and all from theparents and children living it, not from reporters Is there a way we can get a copy of this, Bobbie, to present to legislators, educators, therapists, etc? For PAC, SPED meetings, and at committee hearings? MA, and other states, ae absolutely ready for this......Thanks, Suzanne Messina REAACH, MFVC, AO From: EOHarm [mailto:EOHarm ] On Behalf Of bobbie manningSent: Wednesday, May 10, 2006 7:22 AMEOHarm Subject: Re: Imus on Autism The best PSA I have ever seen. Amazing!!

May 10, 2006

Bob is part of the grassroots. The grassroots is always critical to the efforts.

The s/autism speaks is part of the effort to educate the public.

That is extremely important also.

They will help tip the politics in our favor as Bob and the grassroots put the mechanics in place.

The marketing guys get the lions share of the credit.

The grassroots/mechanics guys win the wars and take the bullets for the herd.

Re: Imus on Autism

For the love of god, do we have to be so condescending? Of course parents need to stay involved and be our own advocates. However, you can not marginalize a group of people because they are paid that is how "real results" sometimes happen. Do you really think every lobbyist "has hands on passion and knowledge"?

Yet, obviously they can be very effective!

Right now so many of the stories on autism are of the feel good variety that make autism look like a bump in the road. This PSA was real and powerful. It addressed the danger, the financial stress , the stress on relationships, the isolation, the fears that we all have before we fall asleep, (if we get to) and the minute we wake up.

I for one cheered when said she won't accept that this is it for a generation of children ( or something to that extent, I was a puddle at that point.) That did not smell of a marketing machine.

I am not saying that Autism Speaks is our savior, I'm not saying as a parent, my job as advocate is any smaller. However, moving a boulder is easier with some momentum. And with out a doubt there is more momentum on our side with Autism Speaks then with the other "well-known " organizations NAAR, ASA, and CAN I am happy to say I'm jumping on the bandwagon.

From: EOHarm [mailto:EOHarm ] On Behalf Of J. KrakowSent: Wednesday, May 10, 2006 9:15 AMEOHarm Subject: Re: Imus on Autism

Regarding this PSA -I have not seen this but I am sure it is powerful. Just remember, however, that Autism Speaks is a great PR and marketing machine but not a real organization of parents. They have a paid staff of people - but not the hands on passion and knowledge that exists in a number of grassroots parent organizations. But they have no "Bandwagon." The heavy lifting has been done and will continue to be done by ordinary parents like us in our various organizations. Autism Speaks has not led that and I don't think they can nor should they. We need our own leaders - not mere public relations stunts. Any tangible accomplishment, especially the state thimerosal bans, the coalition for insurance coverage for autism in NY, the science initiatives and others has been done by ordinary parents. A PSA that is effective will help us, but real organization by parents can only be done by us, not by a marketing machine. We can use the marketing exposure - but that has to be followed by organizational structure and membership by parents with a real agenda that addresses our needs. Toothpaste joint ventures and celebrity marketing raises money, may raise "awareness" but does not drive home our issues in legislatures.So while I am glad that this PSA has appeared and I am eager to see it, let's keep our eye on the ball and not jump on a bandwagon that is a marketing engine and not a true organization of parents. Use the publicity it generates to make our points - that is no substitute for the hands on advocacy that we need to engage in.On May 10, 2006, at 8:21 AM, suzanne messina wrote:

Bobbie is right; this is the kind of PSA we need airing continuously. To feel the impact of this is unlike any other segment I have seen; not that it has not been done before, nut so many examples in such a short time....so much was covered .Behaviors, Finances, Dreams lost, Worries od the future...and all from theparents and children living it, not from reporters Is there a way we can get a copy of this, Bobbie, to present to legislators, educators, therapists, etc? For PAC, SPED meetings, and at committee hearings? MA, and other states, ae absolutely ready for this......Thanks, Suzanne Messina REAACH, MFVC, AO From: EOHarm [mailto:EOHarm ] On Behalf Of bobbie manningSent: Wednesday, May 10, 2006 7:22 AMEOHarm Subject: Re: Imus on Autism The best PSA I have ever seen. Amazing!!

May 11, 2006

The bottom line is the bill puts a lot of money into the hands of the "right kind of autism people". And that's what draws support. People that play the political game and that means they are willing to ditch the attitude, squelch their outspoken voice, and seem likely to kick back some money to the candidate's re-election caravan.

Every election cycle Congress likes to write itself a few blank checks. The man was so cold he would not even watch the video. He simply does not care.

On the other hand, the shortest verse in the Bible is "Jesus wept".

As a father I had no idea what the ropes were. All that I had was one recurring thought, "if everybody will just put our children first everything is going to be alright." That's what I told people in the park. That's what I told people wherever and whenever they wanted to talk.

There were no tears when the government practiced their famous soviet-style bureaucracy featuring the heartless task-style of case management. For every Nyet. Nyet. Nyet. Came a Par. Par. Par.

My eyes got wide when our son's cheery "good job" warm fuzzy distributing OT picked up the phone and began to trade ill tempers with the state care people who decided our son would get one hour a week of therapy.

The ear gates opened when I heard, "no you listen to me....you have no idea what these people have just been going through. You sit in an office and refuse to put a face on this. I have been in this business too long to let you do that. If I come to your office I'll bring a picture with me. I want you to see with your own eyes the little child you are refusing to help."

Re: Imus on Autism> > The best PSA I have ever seen. Amazing!!> > > > >

May 11, 2006

It should not take an act of Congress to force an agency to do it's job. On the other hand, Frist likes what he sees.

I say at least let's try to give the democrats a Senate majority so they change committee leadership and things can finally get going.

Re: Imus on Autism

For the love of god, do we have to be so condescending? Of course parents need to stay involved and be our own advocates. However, you can not marginalize a group of people because they are paid that is how "real results" sometimes happen. Do you really think every lobbyist "has hands on passion and knowledge"?

Yet, obviously they can be very effective!

Right now so many of the stories on autism are of the feel good variety that make autism look like a bump in the road. This PSA was real and powerful. It addressed the danger, the financial stress , the stress on relationships, the isolation, the fears that we all have before we fall asleep, (if we get to) and the minute we wake up.

I for one cheered when said she won't accept that this is it for a generation of children ( or something to that extent, I was a puddle at that point.) That did not smell of a marketing machine.

I am not saying that Autism Speaks is our savior, I'm not saying as a parent, my job as advocate is any smaller. However, moving a boulder is easier with some momentum. And with out a doubt there is more momentum on our side with Autism Speaks then with the other "well-known " organizations NAAR, ASA, and CAN I am happy to say I'm jumping on the bandwagon.

From: EOHarm [mailto:EOHarm ] On Behalf Of J. KrakowSent: Wednesday, May 10, 2006 9:15 AMEOHarm Subject: Re: Imus on Autism

Regarding this PSA -I have not seen this but I am sure it is powerful. Just remember, however, that Autism Speaks is a great PR and marketing machine but not a real organization of parents. They have a paid staff of people - but not the hands on passion and knowledge that exists in a number of grassroots parent organizations. But they have no "Bandwagon." The heavy lifting has been done and will continue to be done by ordinary parents like us in our various organizations. Autism Speaks has not led that and I don't think they can nor should they. We need our own leaders - not mere public relations stunts. Any tangible accomplishment, especially the state thimerosal bans, the coalition for insurance coverage for autism in NY, the science initiatives and others has been done by ordinary parents. A PSA that is effective will help us, but real organization by parents can only be done by us, not by a marketing machine. We can use the marketing exposure - but that has to be followed by organizational structure and membership by parents with a real agenda that addresses our needs. Toothpaste joint ventures and celebrity marketing raises money, may raise "awareness" but does not drive home our issues in legislatures.So while I am glad that this PSA has appeared and I am eager to see it, let's keep our eye on the ball and not jump on a bandwagon that is a marketing engine and not a true organization of parents. Use the publicity it generates to make our points - that is no substitute for the hands on advocacy that we need to engage in.On May 10, 2006, at 8:21 AM, suzanne messina wrote:

Bobbie is right; this is the kind of PSA we need airing continuously. To feel the impact of this is unlike any other segment I have seen; not that it has not been done before, nut so many examples in such a short time....so much was covered .Behaviors, Finances, Dreams lost, Worries od the future...and all from theparents and children living it, not from reporters Is there a way we can get a copy of this, Bobbie, to present to legislators, educators, therapists, etc? For PAC, SPED meetings, and at committee hearings? MA, and other states, ae absolutely ready for this......Thanks, Suzanne Messina REAACH, MFVC, AO From: EOHarm [mailto:EOHarm ] On Behalf Of bobbie manningSent: Wednesday, May 10, 2006 7:22 AMEOHarm Subject: Re: Imus on Autism The best PSA I have ever seen. Amazing!!

May 11, 2006

An alternative view of Santorum...

http://www.rotten.com/library/sex/sodomy/santorum/

- Hokkanen

>

> Bobbie is right; this is the kind of PSA we need airing

> continuously. To feel the impact of this is unlike any other

segment I have

> seen; not that it has not been done before, nut so many examples

in such a

> short time....so much was covered .Behaviors, Finances, Dreams

lost, Worries

> od the future...and all from the

> parents and children living it, not from reporters

>

> Is there a way we can get a copy of this, Bobbie, to present to

> legislators, educators, therapists, etc? For PAC, SPED meetings,

and at

> committee hearings? MA, and other states, ae absolutely ready for

> this......Thanks, Suzanne Messina REAACH, MFVC, AO

>

> From: EOHarm [mailto:EOHarm ] On

Behalf Of

> bobbie manning

> Sent: Wednesday, May 10, 2006 7:22 AM

> EOHarm

> Subject: Re: Imus on Autism

>

> The best PSA I have ever seen. Amazing!!

>

May 11, 2006

Roflmao but then I might click on anything with sex in the link. hahaha

Re: Imus on Autism

>

> The best PSA I have ever seen. Amazing!!

>

May 11, 2006

That is the great danger to public perception when the press only highlights

those who are HFA/AS individuals; the reality of life with Autism becomes

greatly misunderstood. It has been five long years since Kolin's original

diagnosis. With a ton of work, he is now " mostly " normal. There are times,

I need to take a step back from our day to day struggles and look at where

we started. When I do, I appreciate him and how hard he works everyday to

do what everyone expects of him.

It is not that I have forgotten what life was like with a child with Severe

Autism. The tantrums, the stares, the harsh words, the shrieking, the locks

on the doors, the sleep deprivation, the food falling off the wall after

being flung, or any of life with a child with Autism. It is very painful to

remember the words of the professionals who proclaimed he would never live a

life unsupervised. That Kolin would need care for the entirety of his life.

Then I go through all the emotions of grief cycle again, not because I did

not grieve, but it is tied to the reality that Kolin did regress into

Autism.

That said I am grateful that someone has documented what life with Autism is

life for the parents. I am grateful this piece has been released. It is

imperative that reality from our perspective be seen. I hope many have the

opportunity to view this piece, beyond Imus in the morning. I pray the

individuals at Autism Speaks are willing to share this piece with other

organizations for informational purposes. I would beg for Mr. to

have it air on Dateline, the Today Show and other news organizations under

MSNBC, much like they have done with other pieces.

I know I have big dreams and wishes...but why not, Kolin taught me it is OK

to dream big!

But that is my $.02

Sincerely,

U Sovern

www.kolinsjourney.org

Becky Wrote:

should be counting our blessings after seeing what he saw (Noah is

HFA/AS). It was very disturbing to him, but in a good way. I see and

hear what other parents are dealing with, but he doesn't. The only

" autism " he knows is the JMack kind, my son.

May 11, 2006

>

> Bob fights the battle up front.

>

_____

I agree. It would be difficult to find someone more committed to

helping our children then Bob Krakow.

Webster

May 11, 2006

We all need to be contacting our Congresspeople and Senators up for

re-election, as well as those who are running against them. We need to

all work hard to make autism part of the election. If we can get these

people on the record, we might have something to work with.

Debi in TN

I

May 11, 2006

Speaking of AAP, in Nashville we met this very nice gentleman who

talked to us for a long time about his practice and the thimerosal

bill. Said he is a member of the TN Chapter of the AAP, sent to lobby

against the bill. Turns out, the only info we can find on him isn't

his practice in the town he said, but only as a vanderbilt researcher.

Debi

.... That's why we're starting the see the thaw in the AAP with the

publication of Dr. Stoller's letter in the Pediatrics Journal. The

position the AAP has taken with respect to the flu vaccine is too

stupid for words. And they know it.

>

May 11, 2006

It would be nice to see. I'm hoping too, if this was made for a fund

raiser, that it was done to promote empathy not pity to raise more

funds. Now don't get me wrong, I'm not saying that is what this was

done for, but I've seen loads of " charities " use folks to soliciate

funds. What I'm hoping is that people do not pity us, but empathized

in a way to want to make systems change.

The millions of dollars that Autism Speaks has may never benefit the

majority of our kids if that does not occur. I've also seen many

such videos, over many years due to the fact our son is now

fourteen. TACA has done a great piece as has NAA and CAN. Those too

were done for educational purposes.

But within this all we do have to look at how such pieces are

utilized and how our kids are being portrayed. I'd also ask folks to

share in recognition of individuals with ASD that do have

achievements. Someone mentioned the basketball player.....well that

young man has come far, worked hard, and deserves to be recognized as

well.

I think we need to ask what we want overall, yes we'd like folks to

address that mistakes have been made and our loved ones injured.

However for individuals with ASD, we have to realize that lifespan

issues need to be addressed as well.

Hell I've love to see a cure, but what about the folks that may not

be able to obtain a cure?

Sorry but I need that double martini I guess.

CG

> > >

> > > The best PSA I have ever seen. Amazing!!

> > >

> >

>

May 11, 2006

I have absolutely no problem with that.

Whatever will work.

Re: Imus on Autism

For the love of god, do we have to be so condescending? Of course parents need to stay involved and be our own advocates. However, you can not marginalize a group of people because they are paid that is how "real results" sometimes happen. Do you really think every lobbyist "has hands on passion and knowledge"?

Yet, obviously they can be very effective!

Right now so many of the stories on autism are of the feel good variety that make autism look like a bump in the road. This PSA was real and powerful. It addressed the danger, the financial stress , the stress on relationships, the isolation, the fears that we all have before we fall asleep, (if we get to) and the minute we wake up.

I for one cheered when said she won't accept that this is it for a generation of children ( or something to that extent, I was a puddle at that point.) That did not smell of a marketing machine.

I am not saying that Autism Speaks is our savior, I'm not saying as a parent, my job as advocate is any smaller. However, moving a boulder is easier with some momentum. And with out a doubt there is more momentum on our side with Autism Speaks then with the other "well-known " organizations NAAR, ASA, and CAN I am happy to say I'm jumping on the bandwagon.

From: EOHarm [mailto:EOHarm ] On Behalf Of J. KrakowSent: Wednesday, May 10, 2006 9:15 AMEOHarm Subject: Re: Imus on Autism

Regarding this PSA -I have not seen this but I am sure it is powerful. Just remember, however, that Autism Speaks is a great PR and marketing machine but not a real organization of parents. They have a paid staff of people - but not the hands on passion and knowledge that exists in a number of grassroots parent organizations. But they have no "Bandwagon." The heavy lifting has been done and will continue to be done by ordinary parents like us in our various organizations. Autism Speaks has not led that and I don't think they can nor should they. We need our own leaders - not mere public relations stunts. Any tangible accomplishment, especially the state thimerosal bans, the coalition for insurance coverage for autism in NY, the science initiatives and others has been done by ordinary parents. A PSA that is effective will help us, but real organization by parents can only be done by us, not by a marketing machine. We can use the marketing exposure - but that has to be followed by organizational structure and membership by parents with a real agenda that addresses our needs. Toothpaste joint ventures and celebrity marketing raises money, may raise "awareness" but does not drive home our issues in legislatures.So while I am glad that this PSA has appeared and I am eager to see it, let's keep our eye on the ball and not jump on a bandwagon that is a marketing engine and not a true organization of parents. Use the publicity it generates to make our points - that is no substitute for the hands on advocacy that we need to engage in.On May 10, 2006, at 8:21 AM, suzanne messina wrote:

Bobbie is right; this is the kind of PSA we need airing continuously. To feel the impact of this is unlike any other segment I have seen; not that it has not been done before, nut so many examples in such a short time....so much was covered .Behaviors, Finances, Dreams lost, Worries od the future...and all from theparents and children living it, not from reporters Is there a way we can get a copy of this, Bobbie, to present to legislators, educators, therapists, etc? For PAC, SPED meetings, and at committee hearings? MA, and other states, ae absolutely ready for this......Thanks, Suzanne Messina REAACH, MFVC, AO From: EOHarm [mailto:EOHarm ] On Behalf Of bobbie manningSent: Wednesday, May 10, 2006 7:22 AMEOHarm Subject: Re: Imus on Autism The best PSA I have ever seen. Amazing!!

May 11, 2006

I'm not trying to defend Santorum.

I'm just saying that he accurately reflects the present tenor in the Senate and does speak about the reality of getting certain legislation passed.

A Democratic senate will be much more responsive to the autism community.

But Democrats also may have done far more to create the autism community.

Re: Imus on Autism> > The best PSA I have ever seen. Amazing!!> > > > >

May 11, 2006

AMEN sister!

If I have to knock on every door in Pennsylvania!

RE: Imus on Autism

Yea, and we’ll run that pussy out of office for it.

Bob Casey for US Senate http://www.bobcaseyforpa.com

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Re: Imus on Autism

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