autism speaks

[Guest guest]

And i've been getting non-autism community friends telling me they saw or heard a PSA about autism.... that's Autism Speaks. Correct me if i'm wrong- but this is the first time a wide spread blitz has been seen in both radio and television....

I laugh whenever there is something about autism on tv- because just 2 years ago- we used to freak and call each other up. We would be on the phone while the piece aired- crying softly. Then we would call the station right away- holding back tears. Of course we would tape it too.

We would tell everyone we know to watch it.

Now, i'm lucky if I remember it's on- and only really watch the one's about biomed stuff. There has been more in the last 2 years than 20 years before that. I would say 1-2 times a week there is something about autism on national TV (and that doesn't even count All My Children who has a character with ASD).

[Guest guest]

Autism Speaks is getting the word out.

If it turns out they are a CDC front organization, we will have to ju-jitsu them.

I'm not convinced of that yet.

Re: Re: Autism Speaks

And i've been getting non-autism community friends telling me they saw or heard a PSA about autism.... that's Autism Speaks. Correct me if i'm wrong- but this is the first time a wide spread blitz has been seen in both radio and television....I laugh whenever there is something about autism on tv- because just 2 years ago- we used to freak and call each other up. We would be on the phone while the piece aired- crying softly. Then we would call the station right away- holding back tears. Of course we would tape it too.We would tell everyone we know to watch it. Now, i'm lucky if I remember it's on- and only really watch the one's about biomed stuff. There has been more in the last 2 years than 20 years before that. I would say 1-2 times a week there is something about autism on national TV (and that doesn't even count All My Children who has a character with ASD).

[Guest guest]

Yep a friend of mine called from NYC. He was at a Yankees game and

they announced during a break in the game " One in 16,000 kids has a

chance at the major leagues. While one in 166 is born with Autism. "

Another Autism Speaks awareness shot during the Yankees game.

Yes it's everywhere, but it has been too for the last ten years at

least.

So now what? Hopefully it will promote some answers.

Carolyn

>

> And i've been getting non-autism community friends telling me they

saw or

> heard a PSA about autism.... that's Autism Speaks. Correct me if

i'm wrong-

> but this is the first time a wide spread blitz has been seen in

both radio

> and television....

>

> I laugh whenever there is something about autism on tv- because

just 2 years

> ago- we used to freak and call each other up. We would be on the

phone

> while the piece aired- crying softly. Then we would call the

station right

> away- holding back tears. Of course we would tape it too.

> We would tell everyone we know to watch it.

>

> Now, i'm lucky if I remember it's on- and only really watch the

one's about

> biomed stuff. There has been more in the last 2 years than 20

years before

> that. I would say 1-2 times a week there is something about

autism on

> national TV (and that doesn't even count All My Children who has a

character

> with ASD).

>

>

>

[Guest guest]

At my house anytime something about autism is coming on I can count on

the phone ringing just before and during most of the segment. People

are always wanting me to watch it, but I can't for all the calls, lol.

Debi

[Guest guest]

Same here -- I am now trying to figure out how to take my kids surfing

while playing the piano while throwing basketballs in

perfect " swooshes " through the net while crossing the street.....

>

> At my house anytime something about autism is coming on I can count

on

> the phone ringing just before and during most of the segment. People

> are always wanting me to watch it, but I can't for all the calls,

lol.

>

> Debi

>

[Guest guest]

on 6/7/06 12:26 PM, krstagliano at KRStagliano@... wrote:

Same here -- I am now trying to figure out how to take my kids surfing

while playing the piano while throwing basketballs in

perfect " swooshes " through the net while crossing the street.....

LOL---- ok--- that is " the comment of the day " in my book.

[Guest guest]

on 9/6/06 2:12 AM, schaferatsprynet at schafer@... wrote:

Kendra Pettengill has just joined the EOHarm list. I don't point out

every new member who joins, but Kendra just had this commentary

published about Autism Speaks. (Kendra, fwiw, Bob is

subscribed to this list. And where did you get that NAAR is a spinoff

of CAN?) -Lenny

LOL--- I was questioning that NAAR comment too.

Also, just so Kendra knows, here is NY, the county and school districts pays for 30-40 hours of home ABA, a consultant, OT, Speech, PT- whatever the child needs (until they are in K). I've never had to pay for any services for my son. Also, ABA wasn't the thing that helped him- it was biomed stuff- diet & suppliments (and now chelation). Welcome to the jungle Kendra.

BTW- how does Bob find the time to read all these emails?

[Guest guest]

,

Most people do not have the fortunate circumstances that you have

found yourself in regarding ABA and other therpies being paid for by

their school system. The majority are doing what Kendra pointed out

in her OP Ed piece- mortgaging their homes, living off of retirement

funds, and running up all kinds debt to finance an ABA program. Or,

not doing anything because the costs are too daunting.

Also, I think most people who have their children in ABA programs

find they do better with both ABA and Biomed. I think these two

interventions work together. A kid needs to feel better in order to

learn better. I know of some very young children you have only had

biomed and have " recovered " , they too are the minority.

I hope you count your lucky stars that you have been able

to see your son make the gains he has and received free services to

boot.-- I'm still trying to manage debt we incurred from 7 years ago

when we intially financed our 40 hour a week home program. As Kendra

pointed out it can cost anywhere from $40,000 a year and up. My

school system wasn't paying and I didn't have that kind of money

lying around.

..EOHarm , " christine@... " <christine@...> wrote:

>

> on 9/6/06 2:12 AM, schaferatsprynet at schafer@... wrote:

>

>

> Kendra Pettengill has just joined the EOHarm list. I don't point

out

> every new member who joins, but Kendra just had this commentary

> published about Autism Speaks. (Kendra, fwiw, Bob is

> subscribed to this list. And where did you get that NAAR is a

spinoff

> of CAN?) -Lenny

>

> LOL--- I was questioning that NAAR comment too.

>

> Also, just so Kendra knows, here is NY, the county and school

districts pays

> for 30-40 hours of home ABA, a consultant, OT, Speech, PT-

whatever the

> child needs (until they are in K). I've never had to pay for any

services

> for my son. Also, ABA wasn't the thing that helped him- it was

biomed

> stuff- diet & suppliments (and now chelation). Welcome to the

jungle

> Kendra.

>

> BTW- how does Bob find the time to read all these emails?

>

>

>

[Guest guest]

I agree. both biomed and ABA together has helped my 4.5 year old ASD son tremendously. Our military insurance, Tricare, pays for ABA as long as my husband stays active duty and the therapy doesn't cost more than $2,500 per month. My son gets 10 hours per week and the most my insurance has had pay is about $1200 in one month. I do have to pay a co-pay of $50 per month. As far as I know, that is the only insurance that pays for ABA. I hope other insurances companies catch on. I think that if my insurance didn't pay, I would fight hard to get ABA at school. We might be moving to Ft. Belvoir, Virginia next summer and I looked into Fairfax County schools and they have an autism program that includes ABA therapy. I thought that was awesome. Their website is http://www.fcps.edu/ss/ABA/ if anyone lives in the Virginia area or if you want to forward this website to your school and maybe they can get the program.

Vivian

Re: Autism Speaks

,Most people do not have the fortunate circumstances that you have found yourself in regarding ABA and other therpies being paid for by their school system. The majority are doing what Kendra pointed out in her OP Ed piece- mortgaging their homes, living off of retirement funds, and running up all kinds debt to finance an ABA program. Or, not doing anything because the costs are too daunting.Also, I think most people who have their children in ABA programs find they do better with both ABA and Biomed. I think these two interventions work together. A kid needs to feel better in order to learn better. I know of some very young children you have only had biomed and have "recovered", they too are the minority.I hope you count your lucky stars that you have been able to see your son make the gains he has and received free services to boot.-- I'm still trying to manage debt we incurred from 7 years ago when we intially financed our 40 hour a week home program. As Kendra pointed out it can cost anywhere from $40,000 a year and up. My school system wasn't paying and I didn't have that kind of money lying around..EOHarm , "christine@..." <christine@...> wrote:>> on 9/6/06 2:12 AM, schaferatsprynet at schafer@... wrote:> > > Kendra Pettengill has just joined the EOHarm list. I don't point out> every new member who joins, but Kendra just had this commentary> published about Autism Speaks. (Kendra, fwiw, Bob is> subscribed to this list. And where did you get that NAAR is a spinoff> of CAN?) -Lenny> > LOL--- I was questioning that NAAR comment too.> > Also, just so Kendra knows, here is NY, the county and school districts pays> for 30-40 hours of home ABA, a consultant, OT, Speech, PT- whatever the> child needs (until they are in K). I've never had to pay for any services> for my son. Also, ABA wasn't the thing that helped him- it was biomed> stuff- diet & suppliments (and now chelation). Welcome to the jungle> Kendra.> > BTW- how does Bob find the time to read all these emails?> > >

[Guest guest]

TriCare is person dependent and how much you push for ABA with tri-care dependent. I know lots of families at Ft. Gordon in Ga. with tri-care that still can't get theirs paid for.Vivian Duckett <impdegas@...> wrote: I agree. both biomed and ABA together has helped my 4.5 year old ASD son tremendously. Our military insurance, Tricare, pays for ABA as long as my husband stays active duty and the therapy doesn't cost more than $2,500 per month. My son gets 10 hours per week and the most my

insurance has had pay is about $1200 in one month. I do have to pay a co-pay of $50 per month. As far as I know, that is the only insurance that pays for ABA. I hope other insurances companies catch on. I think that if my insurance didn't pay, I would fight hard to get ABA at school. We might be moving to Ft. Belvoir, Virginia next summer and I looked into Fairfax County schools and they have an autism program that includes ABA therapy. I thought that was awesome. Their website is http://www.fcps.edu/ss/ABA/ if anyone lives in the Virginia area or if you want to forward this website to your school and maybe they can get the program. Vivian Re: Autism Speaks ,Most people do not have the fortunate circumstances that you have found yourself in regarding ABA and other therpies being paid for by their school system. The majority are doing what Kendra pointed out in her OP Ed piece- mortgaging their homes, living off of retirement funds, and running up all kinds debt to finance an ABA program. Or, not doing anything because the costs are too daunting.Also, I think most people who have their children in ABA programs

find they do better with both ABA and Biomed. I think these two interventions work together. A kid needs to feel better in order to learn better. I know of some very young children you have only had biomed and have "recovered", they too are the minority.I hope you count your lucky stars that you have been able to see your son make the gains he has and received free services to boot.-- I'm still trying to manage debt we incurred from 7 years ago when we intially financed our 40 hour a week home program. As Kendra pointed out it can cost anywhere from $40,000 a year and up. My school system wasn't paying and I didn't have that kind of money lying around..EOHarm , "christine@..." <christine@...> wrote:>> on 9/6/06 2:12 AM, schaferatsprynet at schafer@... wrote:> > > Kendra

Pettengill has just joined the EOHarm list. I don't point out> every new member who joins, but Kendra just had this commentary> published about Autism Speaks. (Kendra, fwiw, Bob is> subscribed to this list. And where did you get that NAAR is a spinoff> of CAN?) -Lenny> > LOL--- I was questioning that NAAR comment too.> > Also, just so Kendra knows, here is NY, the county and school districts pays> for 30-40 hours of home ABA, a consultant, OT, Speech, PT- whatever the> child needs (until they are in K). I've never had to pay for any services> for my son. Also, ABA wasn't the thing that helped him- it was biomed> stuff- diet & suppliments (and now chelation). Welcome to the jungle> Kendra.> > BTW- how does Bob find the time to read all these emails?> > >

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

I'm glad I haven't had any problems. Thus far, they have paid all my bills (my son has been receiving ABA for 18 months now). I deal with one person in Tricare and we have great communication. I also deal with one person at the ABA office and we have great communication among the three of us (tricare, the ABA office and myself). I hope your friends at Ft. Gordon are able to work it out. It's seems like the common denominator is Ft. Gordan's Tricare people. Those families need to go above Ft. Gordan's Tricare's heads until they get results. Insurance companies in general are a pain to pay things. I'm just glad I've been able to work with mine without any problems. We are at Ft. McPherson, GA.

Re: Autism Speaks

,Most people do not have the fortunate circumstances that you have found yourself in regarding ABA and other therpies being paid for by their school system. The majority are doing what Kendra pointed out in her OP Ed piece- mortgaging their homes, living off of retirement funds, and running up all kinds debt to finance an ABA program. Or, not doing anything because the costs are too daunting.Also, I think most people who have their children in ABA p! rograms find they do better with both ABA and Biomed. I think these two interventions work together. A kid needs to feel better in order to learn better. I know of some very young children you have only had biomed and have "recovered", they too are the minority.I hope you count your lucky stars that you have been able to see your son make the gains he has and received free services to boot.-- I'm still trying to manage debt we incurred from 7 years ago when we intially financed our 40 hour a week home program. As Kendra pointed out it can cost anywhere from $40,000 a year and up. My school system wasn't paying and I didn't have that kind of money lying around..EOHarm , "christine@..." <christine@...> wrote:>> on 9/6/06 2:12 AM, schaferatsprynet at schafer@... wrote:> > > Kendra Pettengill has just joined the EOHarm list. I don't point out> every new member who joins, but Kendra just had this commentary> published about Autism Speaks. (Kendra, fwiw, Bob is> subscribed to this list. And where did you get that NAAR is a spinoff> of CAN?) -Lenny> > LOL--- I was questioning that NAAR comment too.> > Also, just so Kendra knows, here is NY, the county and school districts pays> for 30-40 hours of home ABA, a consultant, OT, Speech, PT- whatever the> child needs (until they are in K). I've never had to pay for any services> for my son. Also, ABA wasn't the thing that helped him- it was biomed> stuff- diet & suppliments (and now chelation). Welcome to the jungle> Kendra.> > BTW- how does Bob find the time to read all these emails?> > >

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

on 9/6/06 9:44 AM, andrea52521991 at mkeller@... wrote:

,

Most people do not have the fortunate circumstances that you have

found yourself in regarding ABA and other therpies being paid for by

their school system. The majority are doing what Kendra pointed out

in her OP Ed piece- mortgaging their homes, living off of retirement

funds, and running up all kinds debt to finance an ABA program. Or,

not doing anything because the costs are too daunting.

Also, I think most people who have their children in ABA programs

find they do better with both ABA and Biomed. I think these two

interventions work together. A kid needs to feel better in order to

learn better. I know of some very young children you have only had

biomed and have " recovered " , they too are the minority.

I hope you count your lucky stars that you have been able

to see your son make the gains he has and received free services to

boot.-- I'm still trying to manage debt we incurred from 7 years ago

when we intially financed our 40 hour a week home program. As Kendra

pointed out it can cost anywhere from $40,000 a year and up. My

school system wasn't paying and I didn't have that kind of money

lying around.

,

Thanks for your email. I am aware of how lucky I am to be on Long Island. I lived in Virginia and worked with ASD kids before having my son and was planning on moving back- but couldn't- after the dx. Also, because of the dx my husband has been gone for almost 8 years- YES, eight years, because he's in the military and we have to stay here. So, he basically has missed out on his wonderful child. We also can't afford a home (average price here is $400,000) and have lived in a crappy apartment for the last 7 years. I am lucky to be in area that has great services- but I do pay a price. The reason why I pointed this out was because Kendra's email talked about how parents have to pay for services- but that is not true for everyone. Not to get all defensive (too late- lol), but anyone who has met me knows how grateful I am. I'm so grateful that over 3 years ago I started a yearly fair/conference along with other parents to bring together the community- so we can take advantage of all the services we do have.

In a way, I wish parents had the option of moving to a place like LI when their child/children was first dx. And I just can't believe schools don't pay for simple things, like an aide. The kid I worked with in Va- his mother goes to school with him. Totally not fair. But, they live in a beautiful home, in a beautiful part of the country, pay a hell of a lot less taxes, and they made a choice. So, for me, I have to take the good with the bad for my choice to stay here.

I wish Autism Speaks would work on this issue- getting every American kid free ABA services- how about that?????

[Guest guest]

Yes, it's great that Tricare pays for ABA (in some parts of the US, I

believe).

I've haven't needed it, but will soon be putting some medical treatments

thru.

If anyone on this list has experience with that- please email me directly

@.... I get NO military help around here and don't

know crap about Tricare. Thanks in advance.

[Guest guest]

For questions on insurance there is an excellent Group that was

formed a few months ago by Sovern, who is the coordinator of the

A-CHAMP Autism Health Insurance Initiative.

The group is called autism_insurance_information

at autism_insurance_information/

Among other things is very familiar with Tricare as her husband

is active military. I think she can help with these questions.

Bob K

On Sep 6, 2006, at 5:13 PM, christine@... wrote:

> <mime-attachment>

J. Krakow

Attorney At Law

2001 Marcus Avenue, Suite N125

Lake Success, New York 11042

(516) 354-3300

(646) 349-1771 (fax)

(212) 227-0600 (NYC telephone)

[Guest guest]

Can someone tell me what ABA stands for so I can find out if my insurance or school will pay for it for my autistic son? Thank you, Kim

[Guest guest]

Applied Behavioral Analysis

Re: Autism Speaks

Can someone tell me what ABA stands for so I can find out if my insurance or school will pay for it for my autistic son?

Thank you,

Kim

[Guest guest]

Applied Behavioral Analysis

Re: Autism Speaks

Can someone tell me what ABA stands for so I can find out if my insurance or school will pay for it for my autistic son?

Thank you,

Kim

[Guest guest]

Applied behavioral analysis aka

behavioral therapy

From: EOHarm

[mailto:EOHarm ] On Behalf Of

Sent: Wednesday, September 06,

2006 10:36 PM

EOHarm

Subject: Re: Autism

Speaks

Can someone tell me what ABA stands for so I can find out if my

insurance or school will pay for it for my autistic son?

Thank you,

Kim

[Guest guest]

Applied behavioral analysis aka

behavioral therapy

From: EOHarm

[mailto:EOHarm ] On Behalf Of

Sent: Wednesday, September 06,

2006 10:36 PM

EOHarm

Subject: Re: Autism

Speaks

Can someone tell me what ABA stands for so I can find out if my

insurance or school will pay for it for my autistic son?

Thank you,

Kim

[Guest guest]

Also, what is biomed and how do I find out about it? Kim

[Guest guest]

Um, biomed is biomedical treatment. It means

that you treat the medical symptoms that your child has rather than the psych

diagnosis they were given.

From:

EOHarm [mailto:EOHarm ] On Behalf Of

Sent: Wednesday, September 06,

2006 10:42 PM

EOHarm

Subject: Re: Autism

Speaks

Also, what is biomed and how do I find out about it?

Kim

[Guest guest]

Thanks for the information. I am new at this and don't know all the

terminology yet.

Kim

>

> Applied Behavioral Analysis

>

>

> Re: Autism Speaks

>

>

> Can someone tell me what ABA stands for so I can find out

if my insurance or school will pay for it for my autistic son?

>

> Thank you,

>

> Kim

>

[Guest guest]

Applied Behavioral Analysis

Re: Autism Speaks

Can someone tell me what ABA stands for so I can find out if my insurance or school will pay for it for my autistic son?

Thank you,

Kim

[Guest guest]

Check out the Generation Rescue website. www.generationrescue.org Read, read,

read.

Pamela

" Courage is doing

what you're afraid to do. There can be no courage unless you're scared. "

Eddie Rickenbacker,

top US

fighter ace, WWI

From:

EOHarm [mailto:EOHarm ] On Behalf Of

Sent: Wednesday, September 06,

2006 10:42 PM

EOHarm

Subject: Re: Autism

Speaks

Also, what is biomed and how do I find out about it?

Kim

[Guest guest]

I would disagree on that to an extent. Since the s came forward

I've had many aquaintances talking to me about autism, saying it's

because they'd seen the s or AutismSpeaks info on one of the

talk shows or a commercial or something like that. These people have

known for years that Allie has autism, but they're only just now,

after Autism Speaks started their publicity, began thinking about it

and feeling open enough to discuss it, and I'm a VERY open person.

I think they are doing good on the publicity front, just not the

research front.

Debi

-- In EOHarm , " Kendra Pettengill " <achsel@...> wrote:

>

> And speaks and speaks and speaks, unfortunately not for people with

> Autism. Self-tooting. Perhaps combined ineffectiveness (two

> negatives) will somehow bring about a positive. Anyone want to hold

> their breath on this one. CANnot SPEAK (for anyone).

> Kendra

>