Hi Margaret,

We're really not into the whole vaccine and bio-medical thing here,
well at least I'm not.  It also conflicts with some of the things we
are into, like a non disease model and assumption of ability.  I know
your advocacies are very powerful and popular in autism as well as
having numerous forums that make this forum look backwoods, so there's
no great need to push them here since they are well publicized and
funded elsewhere.

Our primary interest and priority for what we think is best for auties
is communication and awareness of their sensory and perceptual
differences.  We in fact beleive auties should get together and find
out what is wrong with us.  It could be that auties were the only ones
who escaped autoimmune problems and the rest of us are the way we are
because of them.  I don't know and frankly, from what I know, I don't
think it's important and therefore don't care.

I'm the owner of the list and try to keep it focused occasionally.  I
appreciate your trying to help and hope you will read here some of the
other perspectives and suggestions about autism.  Our view is actually
more scientifcally supported than the other views, but runs into the
age old problem of perceptual bias, prejudice and "flat earth"
assumptions.

Thank you for joining and participating.

Tom

--- Margaret Diann <mother_margaret@...> wrote:

> I believe there are two primary reasons.   Many people have too much
> chemical exposures in their family line &/or directly ... it is like
> the
> 'one thing too much' and tips people into other illnesses/diseases.
> Even Autism ...   AND because many of us these days have some
> autoimmune
> issues going on.  Vaccinations pre-suppose that we have a normal
> working
> Immune system.  That is not so true these days as it was 100 years
> ago.
> Vaccinations
> <http://groups.msn.com/Avoid2-BEforHealth-MM/vaccinations.msnw>   My
> own
> discussion thread on this topic
> 'Nearly all polio outbreaks since 1961 were caused by the oral polio
> vaccine,'
> -Jonas Salk, inventor of the IPV, testifying before a Senate
> subcommittee
>
> Informed Choice <http://www.informedchoice.info/polio.html>
>
> (Doesn't the whole idea of shots rely on normal immune systems ...
> not
> autoimmune immune systems?)
>
> I think the reason this might be ... is that many in our population
> since WWII & before ... back to all major warsss ... have some aspect
> of
> their immune system that is autoimmune.  So, if one's immune system
> has
> gone autoimmune, then it is ignoring the virus & the bacteria ... and
> they go unchecked.
>
> That's my theory, anyway, on why people get the illness they are
> trying
> to be protected from.
>
> I think that we are harming our children (who knows about the old
> folks)
> when we give them flu shots.  And that it is a waste of time to
> develop
> the flu shot for 'bird flu' ... which is nothing more than a chemical
> poisoning in which the immune system becomes autoimmune.
> Many soldiers would be better off without some of the shots they are
> compelled to take, too   Soldiers from major war periods may have
> more
> in common that we realize
> http://www.valdezlink.com/pages/thosewithcfids.htm
> <http://www.valdezlink.com/pages/thosewithcfids.htm>
>


__________________________________________________
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The Headaches are an Autoimmune - Hormonal Issue

We're currently seeking participants for pilot studies of two modules
of GrammarTrainer:  the PhraseTrainer and the QuestionTrainer.
Participants recieve 7 free lesssons of grammar training, and ongoing
assessments of their progress.

The PhraseTrainer trains children to form short phrases and sentences
with adjectives and prepositions.

The QuestionTrainer trains children to construct a variety of
pragmatically appropriate yes-no and WH-questions.

If your child can read and operate a mouse, but has trouble either
with basic phrases and prepositions, or with asking grammatically and
pragmatically appropriate questions, please contact Katharine Beals at:

beals@...

PERFECT.  Thanks Ben.

Tom

--- Tink <tink.le@...> wrote:

> note from Ben at end of post.
>
> -----Original Message-----
> From: autismlist@yahoogroups.com
> [mailto:autismlist@yahoogroups.com]On
> Behalf Of Tom Smith
> Sent: Tuesday, July 25, 2006 8:55 PM
> To: autismlist@yahoogroups.com
> Subject: Re: [Autismlist] Re: my child types...Steve Miller, Alvin
> Lee
> and the Guess Who
>
>
>
>
> --- remarksman <remarksman@...> wrote:
>
> > --- In autismlist@yahoogroups.com, Tom Smith <qim@...> wrote:
> > >
> > >
> > >
> > > --- remarksman <remarksman@...> wrote:
> > >
> > >
> > > I beg your pardon.  While Mr Folky (Dylan) was becoming a born
> > again
> > > thinking that would do the trick, I was was working at head start
> > and
> > > with three nuns at a migrant day care center.  Have you ever
> > > co-parented thousands of kids with women before?
> >
> >
> > chek the re cord
>
> Good for you.  It's nothing to brag about anyway, it's a privilege.
> Silly me.
>
> Good to see you ray.  You must have been in the archives to dig this
> old email up.
>
> > >
> > > Phiff...Bob is an old folky with no balls.  I know you love the
> guy
> >
> > > ray
> >
> >
> > thats right i do, keeps his word and knife sharp
>
> Jeeze, I got alot of nerve to say the things I say. Sharp knife and
> keeps his word?  Good for him.  Hey ray, if you see him tell him to
> say
> hi to Margot, Richie, Rich, and Lynny for me.  They are my best
> friends
> from college who all moved to Woodstock in 1970 to make it in the
> biz.
> Richie got an album out anyway.
>
> > > but we shouldn't worship false idols.
> > >
> > > ; 0 )
> > >
> > > Tom
> > >
> >
> >
> > "we"? lol
>
> <Smile>  Yep, Bobby is a great guy.  It was a tough time to navigate
> in
> and he did it well.
>
> Woodstock in the Winter, what a place.   We were all starting out and
> had such high hopes.  None of us "made it", but we all had fun
> trying.
>
> Bob's got a show on XM Radio called "Theme Time".  I haven't caught
> it
> yet though.
>
> Tom
>
>
> ***note from Ben:
>
> Come on in, and pull yourself up a chair (like Chairry!)
> Let the fun begin, it's time to let down your hair!
> Pee-wee's SO excited,
> 'cause all his friends have been invited (that's you!)
> To go wacky, at Pee-wee's Playhouse!
> There's a crazy rhythm, comin' from Puppetland (what that?)
> Dirty Dog, Cool Cat, and Chicky Baby are the Puppet Band (yeah!)
> He's got a couple of talkin' fish,
> and a genie who'll grant a wish -
> Golly, it's cuckoo at Pee-wee's Playhouse!
>
> Globey's spinnin', Mr. Window's grinnin', 'cause Pterri's flyin' by
> (hello!)
> The Flowers are singin', the Picture Phone is ringin', and the
> Dinosaur
> family goes, "Hi!"
> Mr. Kite's soarin', Conky's still a snorin', there's the flashing
> Magic
> Screen,
> The Cowntess is so classy,
> Randy's kinda sassy - A nuttier establishment you've never seen!
> Spend the day with Pee-wee and you'll see what we mean! (Come on!)
>
> Get outta bed, there'll be no more nappin'! (Wake up!)
> 'Cause you've landed in a place where anything can happen -
> Now we've given you fair warnin'!  It's gonna be that kind of mornin'
> -
> For bein' wacky!  For getting nutty!  Golly, it's cuckoo!  At
> Pee-wee's
> Playhouse!
> ---Pee-wee's Playhouse Theme
> [George McGrath, Paul Reubens, Mark Mothersbaugh]
>
> link to video of Opening Theme:
>
http://www.retrojunk.com/details_theme.php?main_id=89&theme_id=87&play=y
>
> There's a scene wherein Pee-wee's Ant Farm ants spell themselves into
> the
> words "Good Morning!"  It's one of Ben's favorites.  lol   Very
> whacky,
> indeed.
>
> ~*~ Ben & Tink
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>
>
>
>


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-----Original Message-----
From: autismlist@yahoogroups.com [mailto:autismlist@yahoogroups.com]On
Behalf Of Mary Shewan
Sent: Monday, July 24, 2006 3:55 PM
To: autismlist@yahoogroups.com
Subject: [Autismlist] Question on "reasonable accomodation"


Hello,

I was wondering if some of you might be able to give
me some advice.  I took my 12 year old son with autism
to a lab to get a bloodtest.  I told the desk clerk
when I checked in that I'd need an extra person in the
room to hold down my son's arm during the test.  She
said they "don't do that" and added a curt, "why
didn't you bring someone to help you, then?"  We
waited 45 minutes, then when we were called in, I told
the lab tech that we'd need an extra hand for a couple
minutes to help hold down my son's arm.  He said "we
don't have anyone."

**** boy oh boy.  No excuse for the type of rudeness!

We tried to do the blood drawing, but my son was too
wiggly and it couldn't be done.

*** Sorry that your son and you had such a bad experience.

Is this lab in non-compliance with the ADA act for not
providing "reasonable accomodation" toward patients
with disabilities in order that they can get their
health care needs met?

*** I don't really know.  I guess you would have to know the lab's policy on
accomodating others (without "disability") to access a vein for a blood
draw.  For instance, what is the lab's policy on blood draws performed on
younger children (or those with motor control problems, requiring
stabilizing/support from more than the tech, parent, etc.)  You can scout
around the ADA website, which has a tendency to focus on structural/physical
barriers.  But, there is addendum related to *attitude* !  We had to deal
with the ADA a few years ago regarding housing and I found the telephone
staff to be (kindly put ...] incompetent and uninformed.  There is a
"hotline" service through the ADA where you can actually speak to an
attorney there about the situation and get some advice.  It's a regular maze
[like most government services] but if you can get through the telephone
system, you might get some answers.

http://www.usdoj.gov/crt/ada/


I was surprised at their attitude.  They didn't seem
to care about our needs at all.  Now I'm left with
trying to find another lab and maybe going through
this again.

**** Really sorry that this was a bad experience.  It's the type of thing
that can forever alter a child's response to any future blood draws, office
visits, etc.   The best experience we ever had in a lab setting was at Hope
Children's Hospital in Oak Lawn, Ill. [near Chicago.]  The worst has been
recently at Boston Children's Hospital [quality of services there has gone
downhill since we were last there about 4 years ago.]  An important thing to
do is to inform the Doctor who ordered the lab work.  Laboratories rely on
referrals from physicians and if your doctor can get involved, or at least
know of your bad experience, it can make a difference.  Especially if that
physician refers many patients to that lab.

I'd appreciate hearing what you find out and if you get some resolution!

~*~ Tink

I'd appreciate hearing from you.
Thanks,
Mary

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Yahoo! Groups Links

note from Ben at end of post.

-----Original Message-----
From: autismlist@yahoogroups.com [mailto:autismlist@yahoogroups.com]On
Behalf Of Tom Smith
Sent: Tuesday, July 25, 2006 8:55 PM
To: autismlist@yahoogroups.com
Subject: Re: [Autismlist] Re: my child types...Steve Miller, Alvin Lee
and the Guess Who




--- remarksman <remarksman@...> wrote:

> --- In autismlist@yahoogroups.com, Tom Smith <qim@...> wrote:
> >
> >
> >
> > --- remarksman <remarksman@...> wrote:
> >
> >
> > I beg your pardon.  While Mr Folky (Dylan) was becoming a born
> again
> > thinking that would do the trick, I was was working at head start
> and
> > with three nuns at a migrant day care center.  Have you ever
> > co-parented thousands of kids with women before?
>
>
> chek the re cord

Good for you.  It's nothing to brag about anyway, it's a privilege.
Silly me.

Good to see you ray.  You must have been in the archives to dig this
old email up.

> >
> > Phiff...Bob is an old folky with no balls.  I know you love the guy
>
> > ray
>
>
> thats right i do, keeps his word and knife sharp

Jeeze, I got alot of nerve to say the things I say. Sharp knife and
keeps his word?  Good for him.  Hey ray, if you see him tell him to say
hi to Margot, Richie, Rich, and Lynny for me.  They are my best friends
from college who all moved to Woodstock in 1970 to make it in the biz.
Richie got an album out anyway.

> > but we shouldn't worship false idols.
> >
> > ; 0 )
> >
> > Tom
> >
>
>
> "we"? lol

<Smile>  Yep, Bobby is a great guy.  It was a tough time to navigate in
and he did it well.

Woodstock in the Winter, what a place.   We were all starting out and
had such high hopes.  None of us "made it", but we all had fun trying.

Bob's got a show on XM Radio called "Theme Time".  I haven't caught it
yet though.

Tom


***note from Ben:

Come on in, and pull yourself up a chair (like Chairry!)
Let the fun begin, it's time to let down your hair!
Pee-wee's SO excited,
'cause all his friends have been invited (that's you!)
To go wacky, at Pee-wee's Playhouse!
There's a crazy rhythm, comin' from Puppetland (what that?)
Dirty Dog, Cool Cat, and Chicky Baby are the Puppet Band (yeah!)
He's got a couple of talkin' fish,
and a genie who'll grant a wish -
Golly, it's cuckoo at Pee-wee's Playhouse!

Globey's spinnin', Mr. Window's grinnin', 'cause Pterri's flyin' by (hello!)
The Flowers are singin', the Picture Phone is ringin', and the Dinosaur
family goes, "Hi!"
Mr. Kite's soarin', Conky's still a snorin', there's the flashing Magic
Screen,
The Cowntess is so classy,
Randy's kinda sassy - A nuttier establishment you've never seen!
Spend the day with Pee-wee and you'll see what we mean! (Come on!)

Get outta bed, there'll be no more nappin'! (Wake up!)
'Cause you've landed in a place where anything can happen -
Now we've given you fair warnin'!  It's gonna be that kind of mornin' -
For bein' wacky!  For getting nutty!  Golly, it's cuckoo!  At Pee-wee's
Playhouse!
---Pee-wee's Playhouse Theme
[George McGrath, Paul Reubens, Mark Mothersbaugh]

link to video of Opening Theme:
http://www.retrojunk.com/details_theme.php?main_id=89&theme_id=87&play=y

There's a scene wherein Pee-wee's Ant Farm ants spell themselves into the
words "Good Morning!"  It's one of Ben's favorites.  lol   Very whacky,
indeed.

~*~ Ben & Tink


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--- remarksman <remarksman@...> wrote:

> --- In autismlist@yahoogroups.com, Tom Smith <qim@...> wrote:
> >
> >
> >
> > --- remarksman <remarksman@...> wrote:
> >
> >
> > I beg your pardon.  While Mr Folky (Dylan) was becoming a born
> again
> > thinking that would do the trick, I was was working at head start
> and
> > with three nuns at a migrant day care center.  Have you ever
> > co-parented thousands of kids with women before?
>
>
> chek the re cord

Good for you.  It's nothing to brag about anyway, it's a privilege.
Silly me.

Good to see you ray.  You must have been in the archives to dig this
old email up.

> >
> > Phiff...Bob is an old folky with no balls.  I know you love the guy
>
> > ray
>
>
> thats right i do, keeps his word and knife sharp

Jeeze, I got alot of nerve to say the things I say. Sharp knife and
keeps his word?  Good for him.  Hey ray, if you see him tell him to say
hi to Margot, Richie, Rich, and Lynny for me.  They are my best friends
from college who all moved to Woodstock in 1970 to make it in the biz.
Richie got an album out anyway.

> > but we shouldn't worship false idols.
> >
> > ; 0 )
> >
> > Tom
> >
>
>
> "we"? lol

<Smile>  Yep, Bobby is a great guy.  It was a tough time to navigate in
and he did it well.

Woodstock in the Winter, what a place.   We were all starting out and
had such high hopes.  None of us "made it", but we all had fun trying.

Bob's got a show on XM Radio called "Theme Time".  I haven't caught it
yet though.

Tom

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--- In autismlist@yahoogroups.com, Tom Smith <qim@...> wrote:
>
>
>
> --- remarksman <remarksman@...> wrote:
>
> > --- In autismlist@yahoogroups.com, Tom Smith <qim@y...> wrote:
> > >
> > > Bob has the same problem as the rest of us...an inability, or
> > extreme
> > > difficulty in confronting women.
> >
> >
> >
> > dood you put the "pro" in projection!
> >
> > lol
> >
>
> I beg your pardon.  While Mr Folky (Dylan) was becoming a born again
> thinking that would do the trick, I was was working at head start
and
> with three nuns at a migrant day care center.  Have you ever
> co-parented thousands of kids with women before?


chek the re cord


>  It's alot different
> than being a born again and hiding behind a guitar.
>
> > >  So he hides out and does didley.
> >
> >

> >
> >
> > he wrote and performed "maggie's farm" when the country was
> > demanding romantic folk ballads and more "Hello
> > Muddah, Hello Faddah," his audiences were screeching for folk
tunes
> > and calling him judas, and his (non)peers were pressing for
topical
> > tracts
>
> The millions were pouring in as he expanded his audience beyond the
> lame folkies.  Then he electrified which further alinated the lame
> folkies and appealed to millions of us real consumers, most of whom
> were already working on Maggie's Farm while Bob was getting off it
with
> his millions.  Your nuts for having any faith in those idiot
musicians.
>  Look at old Neil who wrote the only anti-feminist song in the
feminist
> era "I Wish I had a Maid".  What the hell has he been doing?
>
> > where were these other outspoken men's activists in 1965?  let's
> > hear some names (i'll wait, plenty of time)
>
> Frank Sinatra.  Richard Nixon.  Bill Buckley.
>
> > this guy was already stripping the empress when the rest of the
> > bunch were bending to lift her
> >
> > ;O)
> >
> > plus "idiot wind," plus "senor," which is both an intimate
dialogue
> > and a direct challenge to american manhood
>
> Nobody's listened to it or if they have they haven't understood his
> whining lyrics.
>
> > i could go on for an hour...
>
> ....and spin your wheels some more.
>
> > tsk tsk o wize one
> >
> > jealousy's a harsh mistress, with a louse inn'er
>
> Phiff...Bob is an old folky with no balls.  I know you love the guy
> ray


thats right i do, keeps his word and knife sharp




> but we shouldn't worship false idols.
>
> ; 0 )
>
> Tom
>


"we"? lol

Hello,

I was wondering if some of you might be able to give
me some advice.  I took my 12 year old son with autism
to a lab to get a bloodtest.  I told the desk clerk
when I checked in that I'd need an extra person in the
room to hold down my son's arm during the test.  She
said they "don't do that" and added a curt, "why
didn't you bring someone to help you, then?"  We
waited 45 minutes, then when we were called in, I told
the lab tech that we'd need an extra hand for a couple
minutes to help hold down my son's arm.  He said "we
don't have anyone."

We tried to do the blood drawing, but my son was too
wiggly and it couldn't be done.

Is this lab in non-compliance with the ADA act for not
providing "reasonable accomodation" toward patients
with disabilities in order that they can get their
health care needs met?

I was surprised at their attitude.  They didn't seem
to care about our needs at all.  Now I'm left with
trying to find another lab and maybe going through
this again.

I'd appreciate hearing from you.
Thanks,
Mary

__________________________________________________
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Tired of spam?  Yahoo! Mail has the best spam protection around
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http://www.seacoastonline.com/news/07232006/nhnews-23sun-autism-conf.html


Those who are living with autism to speak at UNH

By Seva Korogod
vkorogod@...

DURHAM -- Attendees of the Autism Summer Institute, to be held Aug.
14-16 at Holloway Commons at the University of New Hampshire, will have
an opportunity to hear not only from scholars studying autism, but
speakers who are autistic.

The eighth annual event will feature Stephen Shore, a Boston University
doctoral student, Ros Blackburn, a British lecturer, and Larry
Bissonnette, a world-renowned artist, all living with autism.

Autism is a type of neurodevelopmental disorder that is quickly
becoming a prominent issue on the national stage. Individuals diagnosed
with autism generally display abnormality when it comes to social and
communication skills, as well as atypical patterns of interests or
behavior. In most cases, autism is generic, though some experts argue
that environmental factors may also be responsible. It can be diagnosed
for certain at 3 years of age, though degrees of autism spectrum
disorders (ASD) can vary vastly; some individuals may struggle with
simple daily functions, whereas others can be highly functioning and
excel academically.

The most prominent portrayal of an individual with ASD in the
mainstream media can be attributed to Dustin Hoffman for his role in
the 1988 movie "Rain Man" alongside Tom Cruise.

According to Fighting Autism, a nonprofit organization aiming to better
lives of autistic children, there were 667 individuals ages 3 22 who
have been diagnosed with autism in New Hampshire, a significant
increase from the 1994 level of five. In Maine, there were 1,018
autistic children in 2003, a dramatic increase from 1994, when 95
people were diagnosed. In Massachusetts, there were 5,087 with autism
in 2003; whereas in 1994, only 560 Bay State residents were diagnosed
with ASD.

"The Autism Summer Institute is organized around the perspectives of
those who experience autism spectrum disorders from whom we have much
to learn," said Matthew Gianino, manager of marketing and
communications at the Institute on Disability at UNH. "By integrating
important lessons shared by a variety of individuals with ASD together
with evidence-based practices in the areas of literacy,
self-determination and support of emotional well-being, we hope
participants will leave both energized and equipped to support
meaningful learning experiences for students with ASD in regular
education classrooms,"

"The goal of the institute is to go beyond awareness and into
understanding and creating opportunities for people with ASD.

Stephen Shore, the keynote speaker at the event, is an author of
"Beyond the Wall: Personal Experiences with Autism and Asperger
Syndrome." According to his bio, as a child he was diagnosed as being
"too sick" for outpatient treatment, but his parents refused to
institutionalize him. With help from his parents, teachers and others,
he is now completing his doctoral degree in special education at Boston
University with a focus on helping people on the autism spectrum
develop their capacities to the fullest extent possible, his Web site
states. Shore is a frequent speaker at autism and other health
conferences. Later this year, he is scheduled to speak in Japan on
three separate occasions, in South Africa, Australia, as well as
countless conferences stateside.

Ros Blackburn, a resident of Essex, England, is known worldwide as an
outspoken lecturer on autism. "Autism is the inability to single out
people as special, separate, unique entities -- different from bits of
the furniture, different from even the family pet dog," she said in one
of her presentations.

Artist Larry Bissonnette's life and work recently became a subject of
an award-winning documentary, "My Classic Life as an Artist."

"As the community of individuals with autism and Asperger syndrome has
continued to grow, there is an urgent need to provide avenues for
educators and others to learn about the diversity of experiences among
individuals with ASD, to hear the everyday stories of possibilities and
pain. We believe the best way to confront these numbers is through a
dialogue of educational practices, which places at the center an
understanding that educational practices must meet the individual
needs, interests and goals of each student with ASD as an individual
and member of the community," Gianino said.

"We would hope that the various government agencies involved in
directing funding for special education services would develop a better
mechanism to ensure that all children with ASD get needed services
without parents needing to �fight the system' to obtain services," said
Judy Cunniff-Serio, director of administration at the New England
Center for Children.

A single common trait among people with autism is difficulty when it
comes to social interaction and relationships. At an early age, such
clues as a child avoiding eye contact and preferring to play alone are
used to help diagnose ASD. Other symptoms can include difficulties with
verbal communication, delayed language development, limited, repetitive
and overused patterns of behavior, as well as many repetitive behaviors
and attachment to routines. The severity of these symptoms can vary
from person to person, and all types of combinations have been
documented.

The fee to attend the three-day Autism Summer Institute is $390 per
person. Discounts for full-time students, family members of individuals
with ASD, and individuals interested in attending keynote presentations
only are also available.




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	Everything About Anything
Autism Spectrum Disorders
The following article from About was forwarded to you by Tom Smith. Mercury from Cell Phones Blamed for Autism http://autism.about.com/b/a/257583.htm Tom also wanted to add the following comment: I couldn't resist. Tom For more information on this topic, be sure to check out the Autism Spectrum Disorders site. Please note that this email was initiated by Tom Smith, not by personnel at About or the Autism Spectrum Disorders site. About does not monitor these emails, nor can we be responsible for any comments or contents forwarded by the sender. We hope you enjoy the recommended page and remind you that you can always access About directly at http://www.about.com. Our Contact Information 249 West 17th Street New York, NY, 10011 � 2005 About, Inc.

-----Original Message-----
From: autismlist@yahoogroups.com [mailto:autismlist@yahoogroups.com]On
Behalf Of genebensinger
Sent: Thursday, July 20, 2006 3:43 PM
To: autismlist@yahoogroups.com
Subject: [Autismlist] Re: Op-Ed Piece NY Times by parent of autie on
parents who kill


I don't think that autism safety initiatives and medical research are
mutually exclusive. As the result of a horrendous botched arrest of a
young man with autism near Chicago last fall, that resulted in the
young man's death, The Autism Society of Illinois and Autism One
sponsored a law enforcement and first responders training session
this past May led by Dennis Debbault. Ahead of the conference I asked
my local Chicago Police Commander to send a representative.  He sent
two.  CPD immediately saw the issues when their people reported back
and they're now taking steps to add autism to academy training and
roll out training for the existing force citywide.  They saw the
sense in doing it.

**** This is wonderful! news. I'll have to ask my brother to push it in his
command group, as he is CPD.

These tragedies happen with depressing regularity
BECAUSE the training that police officers receive identifies many of
the behaviors we see regularly as threatening.  Police are
essentially trained to overreact. They don't know what they're
dealing with.

***** Yes.  In the Spokane incident, unfortunately ... the police responded
not only in "overreaction" but in a continued pattern of extremely violent
scapegoat-bashing.  None of us are immune to rage reactions in certain
provocative situations; and that's exactly what those guys had.  Cop Rage.
It happens.  And it's not okay.  The problem goes far beyond the the cops
not knowing what they're dealing with in autie reactions/lack of reactions.
And I don't think it is limited to the police, which would be pretty obvious
considering the number of autistics murdered by their own parents.  I
understand your point, however, and you stated it very well.

I think it is incumbent on we, the parents and
caregivers, ask in each of our communities and, if necessary, demand
that first responders get autism training.  Call your police, fire
and ems chief. Ask for a meeting. Educate them about autism and the
huge size of this population. Point out that people with autism are
highly vulnerable and are more likely to have law enforcement
interaction than the average citizen. Print out some of the horror
stories off the internet. Then nicely ask them to think about it.
Call your advocacy group to push the issue.  I, for one am sick of
reading these stories and think the police genuinely want to get it
right. This training is cheap, saves lives and avoids litigation. I
got huge traction and zero pushback here but it's up to us and our
advocacy groups to get the ball rolling.
At the same time I also want a huge rampup in medical research as
well as the lifetime support services that are so badly needed. They
are all important. Gene

****** Gene, if I felt that medical research was going to help stop parents
from murdering their children ... I'd jump on the bandwagon with you.  I'm
afraid that's not what's going to do it.  Support services, yes.  Lifetime
... depends on the individual and level of functioning.  So many issues.
I'll re-post the links to Dennis Debbault's information this weekend.
Thanks for your commentary.  Your son is Nate?

~*~ Tink


  --- In autismlist@yahoogroups.com, Tom Smith <qim@...> wrote:
>
> "We can rest contentedly in our sins and in our stupidities, and
anyone
> who
> has watched gluttons shoveling down the most exquisite foods as if
they
> did
> not know what they were eating will admit that we can ignore even
> pleasure.
> But pain insists upon being attended to. God whispers to us in our
> pleasures, speaks in our consciences, but shouts in our pains. It is
> his
> megaphone to rouse a deaf world." --------- C. S. Lewis
>
> Excellent quote Tink.  Tere's a Japanese theologist of the Fifties
that
> posited that God was in pain.  Makes sense.
>
> Tom
>
> --- Tink <tink.le@...> wrote:
>
> > Yes, it was a well done letter.  What was the alternative
education
> > conference?  What can you share from it that might help others
> > looking to
> > form an intentional autism community?  I still dream every day of
> > this.
> > Lots of obstacles right now; but, I truly believe in my mind,
heart,
> > soul
> > ... that we will succeed in the future.   My heart is heavy, too,
> > with the
> > continued abuses of autistic and other DD people.  There was a
man in
> > Spokane with what was termed "mental disability" (i think he may
have
> > been
> > MR)   He (last name was Zehm) was hogtied and suffocated by the
> > police, who
> > denied wrongdoing.  A convenience store surveillance camera caught
> > the whole
> > incident and it became apparent from the tape that the man had
done
> > nothing
> > wrong and was in a defensive posture when he was set upon by
these 4
> > police
> > officers.   Beaten to the ground, hogtied, and then placed on his
> > stomach.
> > He suffocated.  During the initial beating, he was said to be
> > screaming and
> > fighting.  He was screaming and thrashing because he was so
scared.
> > The
> > police chief assisted in covering up what really happened.  I tell
> > you, I
> > have a number of family members who are police officers.  Despite
> > that, and
> > I understand the whole Blue Brotherhood issue; but, I hope that
these
> > "officers of the peace .ha." fry.  And fry deep.  I could only
find a
> > brief
> > follow-up from the Spokane Review and you had to pay for the
archive
> > article; but, it serves AGAIN ... that instead of focusing on
cures
> > and such
> > ... let's PLEASE ... focus on educating the ignorant; sponsor
Dennis
> > Debauldt's group to give educational inservices to police, fire,
> > rescue
> > personnel around the country on how to recognize and respond
> > appropriately
> > to autistic people.  I could scream, too.  And I have cried a sea
of
> > tears
> > with each of these stories that come to light.  I'm afraid that
more
> > will
> > come to light; especially as the groups such as "Autism Speaks" by
> > NBC gain
> > powerful footholds in the medea mind collective of "Disease,
blight,
> > stamp
> > out, cure."  NBC and this group are particularly heinous
*because* of
> > the
> > powerful media position they hold.  I can barely write about this
> > still, as
> > I become unglued and rambling.  I'll leave it with this quote
from C.
> > S.
> > LEWIS:
> >
> > We can rest contentedly in our sins and in our stupidities, and
> > anyone who
> > has watched gluttons shoveling down the most exquisite foods as if
> > they did
> > not know what they were eating will admit that we can ignore even
> > pleasure.
> > But pain insists upon being attended to. God whispers to us in our
> > pleasures, speaks in our consciences, but shouts in our pains. It
is
> > his
> > megaphone to rouse a deaf world. ---------  C. S. Lewis
> >
> > ~*~ Tink
> >
> > -----Original Message-----
> > From: autismlist@yahoogroups.com
> > [mailto:autismlist@yahoogroups.com]On
> > Behalf Of autisticdreaming
> > Sent: Sunday, July 16, 2006 10:19 PM
> > To: autismlist@yahoogroups.com
> > Subject: [Autismlist] Re: Op-Ed Piece NY Times by parent of autie
on
> > parents who kill
> >
> >
> > i think this hit right on target. i feel so happy for what we're
> > accomplishing here but when i read such disheartening news i get
so
> > deflated. i wonder why? why? i guess we're lucky i know our motto
> > amongst many, we've never had many expectations being an all
around
> > odd and strange family so we haven't suffered as much
> > dissapointments. i guess it's a lucky thing none of us ever talked
> > younger than three.
> >
> > i've gone to the alternative education conference it was amazing..
> > i'm going to the cohousing conference where we'll learn how to
> > successfully form, how to fund and run an intentional community
here
> > in floridaland...
> >
> > we've already got a huge chunk of land already and already some
> > peoples are starting out buying trailers and moving up there. so
i'm
> > back and forth mostly.  what can we do. just move on i guess. i
still
> > wonder why? why? i guess i'll never fully understand. my kid has
> > autism shit and she's got rett syndrome too. it's awful. but as
long
> > as she's happy i don't care that she needs assistance with 90
percent
> > of her daily functions. now she got so many people other than me
> > that's there for her. i know she'll always be okay. we have our
> > terrible times that pass into good times we just hang on for the
ride
> > we don't know how to do anything else. we even buried some of our
> > children, whom we fought for more time but still slipped away..
we've
> > had to deal with autism, cerebral palsy, and more.. we've had to
push
> > wheelchairs and change diapers well into the teens. but we still
> > lived life. how people can be so selfish to not see beyond their
> > situation, another father here in miami threw his sons out a hotel
> > window just to spite his wife. they weren't autistic but peoples
> > selfishness exceeds no bounds. people get crazy when things don't
go
> > the way they want. like it must be this way or else they just
snap.
> > people are so frightening sometimes. you never know who is going
to
> > lose it.
> >
> > but i liked this article alot. we need more of this about. i just
> > cried something awfull about the dad and his son.
> >
> > crabtail
> >
> >
> > --- In autismlist@yahoogroups.com, "Tink" <tink.le@> wrote:
> > >
> > > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?
> > _r=1&oref=slogin
> > > New York Times:  Editorials
> > > Op-Ed Contributor
> > > Autism's Parent Trap
> > > Sign In to E-Mail This Print Save
> > >
> > > By CAMMIE McGOVERN
> > > Published: June 5, 2006
> > > IN recent weeks, three stories have hit the news with grimly
> > similar
> > > plotlines: parents accused of killing their autistic children.
> > >
> > > On April 12, in Hull, England, Alison Davies and her 12-year-old
> > son, Ryan,
> > > fell to their deaths from a bridge over the River Humber, in an
> > apparent
> > > murder-suicide. (A note was found in Ms. Davies's kitchen.) On
May
> > 14, in
> > > Albany, Ore., Christopher DeGroot, 19, was trapped inside a
burning
> > > apartment. He died in a Portland hospital five days later, and
his
> > parents
> > > are charged with murder, accused of locking their son in the
> > apartment
> > > alone. And on the same May Sunday, in Morton, Ill., Dr. Karen
> > McCarron
> > > admitted to the police that she had, the day before, suffocated
her
> > > 3-year-old daughter, Katherine, with a plastic garbage bag.
> > >
> > > Family and friends have come to the defense of two of the
parents
> > involved.
> > > "Ryan was the focus and the purpose of her life," Alison
Davies's
> > sister
> > > told The Sunday Times, calling the double bridge jump "an act of
> > love."
> > >
> > > A friend of Dr. McCarron's � a fellow member of her local
autism-
> > support
> > > group � told a columnist for The Journal Star of Peoria, Ill.,
> that
> > Dr.
> > > McCarron had devoted her life to Katherine. "She never took a
night
> > off,"
> > > the friend said. "She read every book. She was trying so hard,
> > pursuing
> > > every lead."
> > >
> > > Chilling words to any parent of a child with autism who
remembers,
> > as I do,
> > > reading every book, pursuing every lead and never taking a night
> > off �
> > > because autism feels like a war you re-arm yourself nightly to
> > wage. The
> > > comments suggest the parents may have been trying too hard.
Perhaps
> > they
> > > were frustrated that their efforts did not lead to greater
> > improvement in
> > > their children. That would not be surprising, because dramatic
> > improvement
> > > is what too many parents are led to expect.
> > >
> > > Clearly there is a message in the recent deaths about the urgent
> > need to
> > > increase support for the rising number of families struggling
with
> > autism.
> > > Having an autistic child is estimated to cost a family $10,000
to
> > $50,000 a
> > > year in out-of-pocket expenses for medical treatment, therapy
and
> > education.
> > > With 50 new diagnoses of autism in this country every day,
support
> > services
> > > are already too stretched to meet the need.
> > >
> > > But as much as I'd like to fault government policy, I suspect
it is
> > not
> > > entirely to blame. There's another issue that hits closer to
home
> > and is
> > > harder for most parents of autistic children to be candid about.
> > When your
> > > child is initially diagnosed, you read the early bibles of
> > hope: "Let Me
> > > Hear Your Voice," "Son-Rise" and other chronicles of total
recovery
> > from
> > > autism. Hope comes from a variety of treatments, but the
message is
> > the
> > > same: If you commit all your time, your money, your family's
life,
> > recovery
> > > is possible. And who wouldn't do almost anything � mortgage a
> home,
> > abandon
> > > a career or move to be closer to doctors or schools � to
enable
> an
> > autistic
> > > child to lead a normal life?
> > >
> > >
> > > Now, as the mother of a 10-year-old, I will say what no parents
who
> > have
> > > just discovered their child is autistic want to hear, but
should,
> > at least
> > > from one person: I've never met a recovered child outside the
pages
> > of those
> > > old books. Not that it doesn't happen; I'm sure it does. But
it's
> > > extraordinarily rare and it doesn't happen the way we once were
led
> > to
> > > believe.
> > >
> > >
> > > According to her friend, Dr. McCarron was in despair in recent
> > weeks because
> > > Katherine's language had regressed markedly. Every parent of a
> > child on the
> > > autism spectrum knows this feeling: I've done everything
possible;
> > why isn't
> > > he better? The answer is simple: Because this is the way autism
> > works. There
> > > are roadblocks in the brain, mysterious and unmovable. In
> > mythologizing
> > > recovery, I fear we've set an impossibly high bar that's left
the
> > parents of
> > > a half-million autistic children feeling like failures.
> > >
> > > I don't mean to sound pessimistic about the prospects for
autistic
> > children.
> > > On the contrary, I see greater optimism in delivering a more
> > realistic
> > > message to families: Children are not cured, but they do get
> > better.
> > > ***********
> > >
> > > ************And better can be remarkable. At 10, my son is a far
> > cry from
> > > the toddler who melted down when the sand was the wrong texture
for
> > > drizzling. These days he embraces adventure, rides his bike, and
> > repeats any
> > > story he tells five or six times. I remember thinking maybe we'd
> > laugh
> > > someday at the lengths we went to when we were teaching him
> > language � the
> > > flashcards, the drills, the repetitions. Now he's 10 and
talking at
> > last in
> > > his own quirky ways, and we don't laugh about the drills
(though we
> > laugh
> > > about plenty of other things). Language is a victory. So is
> > connection and
> > > purposeful play. So are the simpler things: a full night's
sleep, a
> > > tantrum-free day.
> > >
> > > Parents working toward these goals will one day be surprised and
> > delighted
> > > by their children's funny new obsessions, odd fixations, and
> > tentative but
> > > extraordinary connections with other children. Being more
realistic
> > from the
> > > start might make it possible to enjoy the journey and to see it
for
> > what it
> > > is: helping a child who will always function differently to
> > communicate
> > > better and feel less frustrated. To aim for full recovery �
for
> the
> > person
> > > your child might have been without autism � is to enter a
> dangerous
> > > emotional landscape. For three children, the disconnect between
> > parental
> > > determination and limited progress may have been lethal.
> > >
> > > Cammie McGovern is the author of "Eye Contact," a novel.
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>









Yahoo! Groups Links

To: All Families with Special Needs Children in Dade, Broward, and Palm
Beach

From: The Dimensions Family Club

What: You are invited to a special screening of the new movie, Monster
House 3-D

When: Sunday, July 30, 2006
Time: 10 AM Sharp
Where: Muvico Paradise
                15601 Sheridan Street
                Davie, Florida
Cost: FREE FREE FREE for immediate family
RSVP: 954-236-9415 by July 24

Dimensions Family Club

The Dimensions Family Club is sponsoring a couple of FREE family events
in the next two weeks.
Below is the announcement on the movie, and here is the info on the
bowling party:

Dimensions Family Club Invites You to Summer Bowling

When: Sunday, July 23, 2006
Time: 11:00 AM-12:00 PM
Where: Don Carter University Lanes
            5325 South University Drive
            Davie, Florida

Cost: FREE FREE FREE including pizza, snacks and drinks
For: The Entire Family. Some lanes will have bumpers for the kids

*Kids can wear white-soled sneakers. Adults must rent bowling shoes if
they are bowling

I don't think that autism safety initiatives and medical research are
mutually exclusive. As the result of a horrendous botched arrest of a
young man with autism near Chicago last fall, that resulted in the
young man's death, The Autism Society of Illinois and Autism One
sponsored a law enforcement and first responders training session
this past May led by Dennis Debbault. Ahead of the conference I asked
my local Chicago Police Commander to send a representative.  He sent
two.  CPD immediately saw the issues when their people reported back
and they're now taking steps to add autism to academy training and
roll out training for the existing force citywide.  They saw the
sense in doing it. These tragedies happen with depressing regularity
BECAUSE the training that police officers receive identifies many of
the behaviors we see regularly as threatening.  Police are
essentially trained to overreact. They don't know what they're
dealing with. I think it is incumbent on we, the parents and
caregivers, ask in each of our communities and, if necessary, demand
that first responders get autism training.  Call your police, fire
and ems chief. Ask for a meeting. Educate them about autism and the
huge size of this population. Point out that people with autism are
highly vulnerable and are more likely to have law enforcement
interaction than the average citizen. Print out some of the horror
stories off the internet. Then nicely ask them to think about it.
Call your advocacy group to push the issue.  I, for one am sick of
reading these stories and think the police genuinely want to get it
right. This training is cheap, saves lives and avoids litigation. I
got huge traction and zero pushback here but it's up to us and our
advocacy groups to get the ball rolling.
At the same time I also want a huge rampup in medical research as
well as the lifetime support services that are so badly needed. They
are all important. Gene


  --- In autismlist@yahoogroups.com, Tom Smith <qim@...> wrote:
>
> "We can rest contentedly in our sins and in our stupidities, and
anyone
> who
> has watched gluttons shoveling down the most exquisite foods as if
they
> did
> not know what they were eating will admit that we can ignore even
> pleasure.
> But pain insists upon being attended to. God whispers to us in our
> pleasures, speaks in our consciences, but shouts in our pains. It is
> his
> megaphone to rouse a deaf world." --------- C. S. Lewis
>
> Excellent quote Tink.  Tere's a Japanese theologist of the Fifties
that
> posited that God was in pain.  Makes sense.
>
> Tom
>
> --- Tink <tink.le@...> wrote:
>
> > Yes, it was a well done letter.  What was the alternative
education
> > conference?  What can you share from it that might help others
> > looking to
> > form an intentional autism community?  I still dream every day of
> > this.
> > Lots of obstacles right now; but, I truly believe in my mind,
heart,
> > soul
> > ... that we will succeed in the future.   My heart is heavy, too,
> > with the
> > continued abuses of autistic and other DD people.  There was a
man in
> > Spokane with what was termed "mental disability" (i think he may
have
> > been
> > MR)   He (last name was Zehm) was hogtied and suffocated by the
> > police, who
> > denied wrongdoing.  A convenience store surveillance camera caught
> > the whole
> > incident and it became apparent from the tape that the man had
done
> > nothing
> > wrong and was in a defensive posture when he was set upon by
these 4
> > police
> > officers.   Beaten to the ground, hogtied, and then placed on his
> > stomach.
> > He suffocated.  During the initial beating, he was said to be
> > screaming and
> > fighting.  He was screaming and thrashing because he was so
scared.
> > The
> > police chief assisted in covering up what really happened.  I tell
> > you, I
> > have a number of family members who are police officers.  Despite
> > that, and
> > I understand the whole Blue Brotherhood issue; but, I hope that
these
> > "officers of the peace .ha." fry.  And fry deep.  I could only
find a
> > brief
> > follow-up from the Spokane Review and you had to pay for the
archive
> > article; but, it serves AGAIN ... that instead of focusing on
cures
> > and such
> > ... let's PLEASE ... focus on educating the ignorant; sponsor
Dennis
> > Debauldt's group to give educational inservices to police, fire,
> > rescue
> > personnel around the country on how to recognize and respond
> > appropriately
> > to autistic people.  I could scream, too.  And I have cried a sea
of
> > tears
> > with each of these stories that come to light.  I'm afraid that
more
> > will
> > come to light; especially as the groups such as "Autism Speaks" by
> > NBC gain
> > powerful footholds in the medea mind collective of "Disease,
blight,
> > stamp
> > out, cure."  NBC and this group are particularly heinous
*because* of
> > the
> > powerful media position they hold.  I can barely write about this
> > still, as
> > I become unglued and rambling.  I'll leave it with this quote
from C.
> > S.
> > LEWIS:
> >
> > We can rest contentedly in our sins and in our stupidities, and
> > anyone who
> > has watched gluttons shoveling down the most exquisite foods as if
> > they did
> > not know what they were eating will admit that we can ignore even
> > pleasure.
> > But pain insists upon being attended to. God whispers to us in our
> > pleasures, speaks in our consciences, but shouts in our pains. It
is
> > his
> > megaphone to rouse a deaf world. ---------  C. S. Lewis
> >
> > ~*~ Tink
> >
> > -----Original Message-----
> > From: autismlist@yahoogroups.com
> > [mailto:autismlist@yahoogroups.com]On
> > Behalf Of autisticdreaming
> > Sent: Sunday, July 16, 2006 10:19 PM
> > To: autismlist@yahoogroups.com
> > Subject: [Autismlist] Re: Op-Ed Piece NY Times by parent of autie
on
> > parents who kill
> >
> >
> > i think this hit right on target. i feel so happy for what we're
> > accomplishing here but when i read such disheartening news i get
so
> > deflated. i wonder why? why? i guess we're lucky i know our motto
> > amongst many, we've never had many expectations being an all
around
> > odd and strange family so we haven't suffered as much
> > dissapointments. i guess it's a lucky thing none of us ever talked
> > younger than three.
> >
> > i've gone to the alternative education conference it was amazing..
> > i'm going to the cohousing conference where we'll learn how to
> > successfully form, how to fund and run an intentional community
here
> > in floridaland...
> >
> > we've already got a huge chunk of land already and already some
> > peoples are starting out buying trailers and moving up there. so
i'm
> > back and forth mostly.  what can we do. just move on i guess. i
still
> > wonder why? why? i guess i'll never fully understand. my kid has
> > autism shit and she's got rett syndrome too. it's awful. but as
long
> > as she's happy i don't care that she needs assistance with 90
percent
> > of her daily functions. now she got so many people other than me
> > that's there for her. i know she'll always be okay. we have our
> > terrible times that pass into good times we just hang on for the
ride
> > we don't know how to do anything else. we even buried some of our
> > children, whom we fought for more time but still slipped away..
we've
> > had to deal with autism, cerebral palsy, and more.. we've had to
push
> > wheelchairs and change diapers well into the teens. but we still
> > lived life. how people can be so selfish to not see beyond their
> > situation, another father here in miami threw his sons out a hotel
> > window just to spite his wife. they weren't autistic but peoples
> > selfishness exceeds no bounds. people get crazy when things don't
go
> > the way they want. like it must be this way or else they just
snap.
> > people are so frightening sometimes. you never know who is going
to
> > lose it.
> >
> > but i liked this article alot. we need more of this about. i just
> > cried something awfull about the dad and his son.
> >
> > crabtail
> >
> >
> > --- In autismlist@yahoogroups.com, "Tink" <tink.le@> wrote:
> > >
> > > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?
> > _r=1&oref=slogin
> > > New York Times:  Editorials
> > > Op-Ed Contributor
> > > Autism's Parent Trap
> > > Sign In to E-Mail This Print Save
> > >
> > > By CAMMIE McGOVERN
> > > Published: June 5, 2006
> > > IN recent weeks, three stories have hit the news with grimly
> > similar
> > > plotlines: parents accused of killing their autistic children.
> > >
> > > On April 12, in Hull, England, Alison Davies and her 12-year-old
> > son, Ryan,
> > > fell to their deaths from a bridge over the River Humber, in an
> > apparent
> > > murder-suicide. (A note was found in Ms. Davies's kitchen.) On
May
> > 14, in
> > > Albany, Ore., Christopher DeGroot, 19, was trapped inside a
burning
> > > apartment. He died in a Portland hospital five days later, and
his
> > parents
> > > are charged with murder, accused of locking their son in the
> > apartment
> > > alone. And on the same May Sunday, in Morton, Ill., Dr. Karen
> > McCarron
> > > admitted to the police that she had, the day before, suffocated
her
> > > 3-year-old daughter, Katherine, with a plastic garbage bag.
> > >
> > > Family and friends have come to the defense of two of the
parents
> > involved.
> > > "Ryan was the focus and the purpose of her life," Alison
Davies's
> > sister
> > > told The Sunday Times, calling the double bridge jump "an act of
> > love."
> > >
> > > A friend of Dr. McCarron's � a fellow member of her local
autism-
> > support
> > > group � told a columnist for The Journal Star of Peoria, Ill.,
> that
> > Dr.
> > > McCarron had devoted her life to Katherine. "She never took a
night
> > off,"
> > > the friend said. "She read every book. She was trying so hard,
> > pursuing
> > > every lead."
> > >
> > > Chilling words to any parent of a child with autism who
remembers,
> > as I do,
> > > reading every book, pursuing every lead and never taking a night
> > off �
> > > because autism feels like a war you re-arm yourself nightly to
> > wage. The
> > > comments suggest the parents may have been trying too hard.
Perhaps
> > they
> > > were frustrated that their efforts did not lead to greater
> > improvement in
> > > their children. That would not be surprising, because dramatic
> > improvement
> > > is what too many parents are led to expect.
> > >
> > > Clearly there is a message in the recent deaths about the urgent
> > need to
> > > increase support for the rising number of families struggling
with
> > autism.
> > > Having an autistic child is estimated to cost a family $10,000
to
> > $50,000 a
> > > year in out-of-pocket expenses for medical treatment, therapy
and
> > education.
> > > With 50 new diagnoses of autism in this country every day,
support
> > services
> > > are already too stretched to meet the need.
> > >
> > > But as much as I'd like to fault government policy, I suspect
it is
> > not
> > > entirely to blame. There's another issue that hits closer to
home
> > and is
> > > harder for most parents of autistic children to be candid about.
> > When your
> > > child is initially diagnosed, you read the early bibles of
> > hope: "Let Me
> > > Hear Your Voice," "Son-Rise" and other chronicles of total
recovery
> > from
> > > autism. Hope comes from a variety of treatments, but the
message is
> > the
> > > same: If you commit all your time, your money, your family's
life,
> > recovery
> > > is possible. And who wouldn't do almost anything � mortgage a
> home,
> > abandon
> > > a career or move to be closer to doctors or schools � to
enable
> an
> > autistic
> > > child to lead a normal life?
> > >
> > >
> > > Now, as the mother of a 10-year-old, I will say what no parents
who
> > have
> > > just discovered their child is autistic want to hear, but
should,
> > at least
> > > from one person: I've never met a recovered child outside the
pages
> > of those
> > > old books. Not that it doesn't happen; I'm sure it does. But
it's
> > > extraordinarily rare and it doesn't happen the way we once were
led
> > to
> > > believe.
> > >
> > >
> > > According to her friend, Dr. McCarron was in despair in recent
> > weeks because
> > > Katherine's language had regressed markedly. Every parent of a
> > child on the
> > > autism spectrum knows this feeling: I've done everything
possible;
> > why isn't
> > > he better? The answer is simple: Because this is the way autism
> > works. There
> > > are roadblocks in the brain, mysterious and unmovable. In
> > mythologizing
> > > recovery, I fear we've set an impossibly high bar that's left
the
> > parents of
> > > a half-million autistic children feeling like failures.
> > >
> > > I don't mean to sound pessimistic about the prospects for
autistic
> > children.
> > > On the contrary, I see greater optimism in delivering a more
> > realistic
> > > message to families: Children are not cured, but they do get
> > better.
> > > ***********
> > >
> > > ************And better can be remarkable. At 10, my son is a far
> > cry from
> > > the toddler who melted down when the sand was the wrong texture
for
> > > drizzling. These days he embraces adventure, rides his bike, and
> > repeats any
> > > story he tells five or six times. I remember thinking maybe we'd
> > laugh
> > > someday at the lengths we went to when we were teaching him
> > language � the
> > > flashcards, the drills, the repetitions. Now he's 10 and
talking at
> > last in
> > > his own quirky ways, and we don't laugh about the drills
(though we
> > laugh
> > > about plenty of other things). Language is a victory. So is
> > connection and
> > > purposeful play. So are the simpler things: a full night's
sleep, a
> > > tantrum-free day.
> > >
> > > Parents working toward these goals will one day be surprised and
> > delighted
> > > by their children's funny new obsessions, odd fixations, and
> > tentative but
> > > extraordinary connections with other children. Being more
realistic
> > from the
> > > start might make it possible to enjoy the journey and to see it
for
> > what it
> > > is: helping a child who will always function differently to
> > communicate
> > > better and feel less frustrated. To aim for full recovery �
for
> the
> > person
> > > your child might have been without autism � is to enter a
> dangerous
> > > emotional landscape. For three children, the disconnect between
> > parental
> > > determination and limited progress may have been lethal.
> > >
> > > Cammie McGovern is the author of "Eye Contact," a novel.
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>

Thanks Tink for checking this out.  In '96-'97 when I was enscounced in
my favorite place in the library, the religion section... which was
near the psych section where I started out 25 years ago, I was perusing
the different theologists and Kazoh Kitamori's "God In Pain" book
struck me as particularly relevant to what I was dealing with in autism
AND God.  It wasn't only physcal pain I was thinking of but of knowing
and feeling eveything and not being able to show how to avoid it while
continually being victimized by the ignorance.  Then I'd think how
autistics were treated throughout history and I'd wince.  It reminds me
of Jesus.

Tom

--- Tink <tink.le@...> wrote:

> Clipped from Tom's response to the C.S. Lewis quote:
>
> "We can rest contentedly in our sins and in our stupidities, and
> anyone
> who has watched gluttons shoveling down the most exquisite foods as
> if they
> did not know what they were eating will admit that we can ignore even
> pleasure.
> But pain insists upon being attended to. God whispers to us in our
> pleasures, speaks in our consciences, but shouts in our pains. It is
> his megaphone to rouse a deaf world." --------- C. S. Lewis
>
> ">>>Excellent quote Tink.  Tere's a Japanese theologist of the
> Fifties that
> posited that God was in pain.  Makes sense.<<<"
> Tom
>
> ***I couldn't recall that theologist, so did some searching.  His
> name is
> Kazoh Kitamori.
>
> This paper is a very interesting journey into the question of God's
> suffering/pain.  Dr. Sia covers an interesting range of thought and
> there
> are very interesting parallels made using Hemingway's The Old Man and
> The
> Sea, as well as Steinbeck's "The Pearl."  I don't remember reading
> Kazoh
> Kitamori (the theologist referred to by Tom) (the original work was
> written
> in 1946.)
>
> http://www.ul.ie/~philos/vol1/paper2.html
>
> "Speaking About God in the Midst of Suffering"
> by Santiago Sia, PhD
> Loyola Marymount University-1996
> Los Angeles
>
>
> "Kazoh Kitamori in his book The Theology of the Pain of God writes
> that
> there is something in Japanese culture which allows for a fuller
> understanding of divine suffering insofar as even common people are
> appreciative of tragic themes in their drama."
>
> "....suffering challenges the way we describe God. In fact, suffering
> or the
> feeling of pain, whether mental or physical, has always been a source
> of
> serious and often perplexing questioning. We cannot help but wonder
> why
> there is so much suffering in the world. At times we may know the
> immediate
> cause, for instance, someone's foolish act; but this is small
> consolation
> because the knowledge of how something has resulted in a person's
> affliction
> is not sufficient to justify his or her plight. In other words, the
> reality
> of suffering demands not just an explanation but a justification.
> This is
> why the traditional distinction between moral evil (the consequence
> of human
> free acts) and natural evil (natural disasters which are considered
> to be
> outside reasonable human control) can sometimes be unhelpful. Even
> when we
> know how the suffering came about, its very existence will continue
> to
> trouble us. For it does not make sense that creatures should be prey
> to so
> much suffering."
>
> quoted from Rabbi Harold Kushner (When Bad Things Happen To Good
> People):
> "I don't know what it means for God to suffer. I don't believe that
> God is a
> person like me, with real eyes and real tearducts to cry and real
> nerve
> endings to feel pain. But I would like to think that the anguish I
> feel when
> I read of the sufferings of innocent people reflects God's anguish
> and God's
> compassion, even if His way of feeling pain is different from ours. I
> would
> like to think that He is the source of my being able to feel sympathy
> and
> outrage, and that He and I are on the same side when we stand with
> the
> victim against those who would hurt him. (WBTHTGP, 92-93)."
>
> I remember leaning heavily upon Rabbi Kushner's writings during my
> work in
> Oncology/Hospice.  It would seem that we're given (as people of God,
> people
> of the Earth, whatever) the responsibility to love and care for
> another.
> Given few other circumstances, I'd also have to say that the majority
> of
> suffering and pain in the world is directly related to HUMAN cause.
> Hence,
> it would be human responsibility to alleviate the causes.  Mostly, I
> think
> "attitude" could stand the test of the causal in many, many
> instances.
> Change your attitude.  Change the World.  It would also (maybe) stand
> to
> reason that our attitudes and resultant acts cause pain/suffering or
> comfort/solace to God.  Attitude.  An 8-letter word anagrams to a
> couple of
> interesting words.  "taut duet edit id tied"  Okay. That's it for me!
>  Good
> night!
> ~*~ Tink
>
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Clipped from Tom's response to the C.S. Lewis quote:

"We can rest contentedly in our sins and in our stupidities, and anyone
who has watched gluttons shoveling down the most exquisite foods as if they
did not know what they were eating will admit that we can ignore even
pleasure.
But pain insists upon being attended to. God whispers to us in our
pleasures, speaks in our consciences, but shouts in our pains. It is
his megaphone to rouse a deaf world." --------- C. S. Lewis

">>>Excellent quote Tink.  Tere's a Japanese theologist of the Fifties that
posited that God was in pain.  Makes sense.<<<"
Tom

***I couldn't recall that theologist, so did some searching.  His name is
Kazoh Kitamori.

This paper is a very interesting journey into the question of God's
suffering/pain.  Dr. Sia covers an interesting range of thought and there
are very interesting parallels made using Hemingway's The Old Man and The
Sea, as well as Steinbeck's "The Pearl."  I don't remember reading Kazoh
Kitamori (the theologist referred to by Tom) (the original work was written
in 1946.)

http://www.ul.ie/~philos/vol1/paper2.html

"Speaking About God in the Midst of Suffering"
by Santiago Sia, PhD
Loyola Marymount University-1996
Los Angeles


"Kazoh Kitamori in his book The Theology of the Pain of God writes that
there is something in Japanese culture which allows for a fuller
understanding of divine suffering insofar as even common people are
appreciative of tragic themes in their drama."

"....suffering challenges the way we describe God. In fact, suffering or the
feeling of pain, whether mental or physical, has always been a source of
serious and often perplexing questioning. We cannot help but wonder why
there is so much suffering in the world. At times we may know the immediate
cause, for instance, someone's foolish act; but this is small consolation
because the knowledge of how something has resulted in a person's affliction
is not sufficient to justify his or her plight. In other words, the reality
of suffering demands not just an explanation but a justification. This is
why the traditional distinction between moral evil (the consequence of human
free acts) and natural evil (natural disasters which are considered to be
outside reasonable human control) can sometimes be unhelpful. Even when we
know how the suffering came about, its very existence will continue to
trouble us. For it does not make sense that creatures should be prey to so
much suffering."

quoted from Rabbi Harold Kushner (When Bad Things Happen To Good People):
"I don't know what it means for God to suffer. I don't believe that God is a
person like me, with real eyes and real tearducts to cry and real nerve
endings to feel pain. But I would like to think that the anguish I feel when
I read of the sufferings of innocent people reflects God's anguish and God's
compassion, even if His way of feeling pain is different from ours. I would
like to think that He is the source of my being able to feel sympathy and
outrage, and that He and I are on the same side when we stand with the
victim against those who would hurt him. (WBTHTGP, 92-93)."

I remember leaning heavily upon Rabbi Kushner's writings during my work in
Oncology/Hospice.  It would seem that we're given (as people of God, people
of the Earth, whatever) the responsibility to love and care for another.
Given few other circumstances, I'd also have to say that the majority of
suffering and pain in the world is directly related to HUMAN cause.  Hence,
it would be human responsibility to alleviate the causes.  Mostly, I think
"attitude" could stand the test of the causal in many, many instances.
Change your attitude.  Change the World.  It would also (maybe) stand to
reason that our attitudes and resultant acts cause pain/suffering or
comfort/solace to God.  Attitude.  An 8-letter word anagrams to a couple of
interesting words.  "taut duet edit id tied"  Okay. That's it for me!  Good
night!
~*~ Tink

"We can rest contentedly in our sins and in our stupidities, and anyone
who
has watched gluttons shoveling down the most exquisite foods as if they
did
not know what they were eating will admit that we can ignore even
pleasure.
But pain insists upon being attended to. God whispers to us in our
pleasures, speaks in our consciences, but shouts in our pains. It is
his
megaphone to rouse a deaf world." --------- C. S. Lewis

Excellent quote Tink.  Tere's a Japanese theologist of the Fifties that
posited that God was in pain.  Makes sense.

Tom

--- Tink <tink.le@...> wrote:

> Yes, it was a well done letter.  What was the alternative education
> conference?  What can you share from it that might help others
> looking to
> form an intentional autism community?  I still dream every day of
> this.
> Lots of obstacles right now; but, I truly believe in my mind, heart,
> soul
> ... that we will succeed in the future.   My heart is heavy, too,
> with the
> continued abuses of autistic and other DD people.  There was a man in
> Spokane with what was termed "mental disability" (i think he may have
> been
> MR)   He (last name was Zehm) was hogtied and suffocated by the
> police, who
> denied wrongdoing.  A convenience store surveillance camera caught
> the whole
> incident and it became apparent from the tape that the man had done
> nothing
> wrong and was in a defensive posture when he was set upon by these 4
> police
> officers.   Beaten to the ground, hogtied, and then placed on his
> stomach.
> He suffocated.  During the initial beating, he was said to be
> screaming and
> fighting.  He was screaming and thrashing because he was so scared.
> The
> police chief assisted in covering up what really happened.  I tell
> you, I
> have a number of family members who are police officers.  Despite
> that, and
> I understand the whole Blue Brotherhood issue; but, I hope that these
> "officers of the peace .ha." fry.  And fry deep.  I could only find a
> brief
> follow-up from the Spokane Review and you had to pay for the archive
> article; but, it serves AGAIN ... that instead of focusing on cures
> and such
> ... let's PLEASE ... focus on educating the ignorant; sponsor Dennis
> Debauldt's group to give educational inservices to police, fire,
> rescue
> personnel around the country on how to recognize and respond
> appropriately
> to autistic people.  I could scream, too.  And I have cried a sea of
> tears
> with each of these stories that come to light.  I'm afraid that more
> will
> come to light; especially as the groups such as "Autism Speaks" by
> NBC gain
> powerful footholds in the medea mind collective of "Disease, blight,
> stamp
> out, cure."  NBC and this group are particularly heinous *because* of
> the
> powerful media position they hold.  I can barely write about this
> still, as
> I become unglued and rambling.  I'll leave it with this quote from C.
> S.
> LEWIS:
>
> We can rest contentedly in our sins and in our stupidities, and
> anyone who
> has watched gluttons shoveling down the most exquisite foods as if
> they did
> not know what they were eating will admit that we can ignore even
> pleasure.
> But pain insists upon being attended to. God whispers to us in our
> pleasures, speaks in our consciences, but shouts in our pains. It is
> his
> megaphone to rouse a deaf world. ---------  C. S. Lewis
>
> ~*~ Tink
>
> -----Original Message-----
> From: autismlist@yahoogroups.com
> [mailto:autismlist@yahoogroups.com]On
> Behalf Of autisticdreaming
> Sent: Sunday, July 16, 2006 10:19 PM
> To: autismlist@yahoogroups.com
> Subject: [Autismlist] Re: Op-Ed Piece NY Times by parent of autie on
> parents who kill
>
>
> i think this hit right on target. i feel so happy for what we're
> accomplishing here but when i read such disheartening news i get so
> deflated. i wonder why? why? i guess we're lucky i know our motto
> amongst many, we've never had many expectations being an all around
> odd and strange family so we haven't suffered as much
> dissapointments. i guess it's a lucky thing none of us ever talked
> younger than three.
>
> i've gone to the alternative education conference it was amazing..
> i'm going to the cohousing conference where we'll learn how to
> successfully form, how to fund and run an intentional community here
> in floridaland...
>
> we've already got a huge chunk of land already and already some
> peoples are starting out buying trailers and moving up there. so i'm
> back and forth mostly.  what can we do. just move on i guess. i still
> wonder why? why? i guess i'll never fully understand. my kid has
> autism shit and she's got rett syndrome too. it's awful. but as long
> as she's happy i don't care that she needs assistance with 90 percent
> of her daily functions. now she got so many people other than me
> that's there for her. i know she'll always be okay. we have our
> terrible times that pass into good times we just hang on for the ride
> we don't know how to do anything else. we even buried some of our
> children, whom we fought for more time but still slipped away.. we've
> had to deal with autism, cerebral palsy, and more.. we've had to push
> wheelchairs and change diapers well into the teens. but we still
> lived life. how people can be so selfish to not see beyond their
> situation, another father here in miami threw his sons out a hotel
> window just to spite his wife. they weren't autistic but peoples
> selfishness exceeds no bounds. people get crazy when things don't go
> the way they want. like it must be this way or else they just snap.
> people are so frightening sometimes. you never know who is going to
> lose it.
>
> but i liked this article alot. we need more of this about. i just
> cried something awfull about the dad and his son.
>
> crabtail
>
>
> --- In autismlist@yahoogroups.com, "Tink" <tink.le@...> wrote:
> >
> > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?
> _r=1&oref=slogin
> > New York Times:  Editorials
> > Op-Ed Contributor
> > Autism's Parent Trap
> > Sign In to E-Mail This Print Save
> >
> > By CAMMIE McGOVERN
> > Published: June 5, 2006
> > IN recent weeks, three stories have hit the news with grimly
> similar
> > plotlines: parents accused of killing their autistic children.
> >
> > On April 12, in Hull, England, Alison Davies and her 12-year-old
> son, Ryan,
> > fell to their deaths from a bridge over the River Humber, in an
> apparent
> > murder-suicide. (A note was found in Ms. Davies's kitchen.) On May
> 14, in
> > Albany, Ore., Christopher DeGroot, 19, was trapped inside a burning
> > apartment. He died in a Portland hospital five days later, and his
> parents
> > are charged with murder, accused of locking their son in the
> apartment
> > alone. And on the same May Sunday, in Morton, Ill., Dr. Karen
> McCarron
> > admitted to the police that she had, the day before, suffocated her
> > 3-year-old daughter, Katherine, with a plastic garbage bag.
> >
> > Family and friends have come to the defense of two of the parents
> involved.
> > "Ryan was the focus and the purpose of her life," Alison Davies's
> sister
> > told The Sunday Times, calling the double bridge jump "an act of
> love."
> >
> > A friend of Dr. McCarron's � a fellow member of her local autism-
> support
> > group � told a columnist for The Journal Star of Peoria, Ill.,
that
> Dr.
> > McCarron had devoted her life to Katherine. "She never took a night
> off,"
> > the friend said. "She read every book. She was trying so hard,
> pursuing
> > every lead."
> >
> > Chilling words to any parent of a child with autism who remembers,
> as I do,
> > reading every book, pursuing every lead and never taking a night
> off �
> > because autism feels like a war you re-arm yourself nightly to
> wage. The
> > comments suggest the parents may have been trying too hard. Perhaps
> they
> > were frustrated that their efforts did not lead to greater
> improvement in
> > their children. That would not be surprising, because dramatic
> improvement
> > is what too many parents are led to expect.
> >
> > Clearly there is a message in the recent deaths about the urgent
> need to
> > increase support for the rising number of families struggling with
> autism.
> > Having an autistic child is estimated to cost a family $10,000 to
> $50,000 a
> > year in out-of-pocket expenses for medical treatment, therapy and
> education.
> > With 50 new diagnoses of autism in this country every day, support
> services
> > are already too stretched to meet the need.
> >
> > But as much as I'd like to fault government policy, I suspect it is
> not
> > entirely to blame. There's another issue that hits closer to home
> and is
> > harder for most parents of autistic children to be candid about.
> When your
> > child is initially diagnosed, you read the early bibles of
> hope: "Let Me
> > Hear Your Voice," "Son-Rise" and other chronicles of total recovery
> from
> > autism. Hope comes from a variety of treatments, but the message is
> the
> > same: If you commit all your time, your money, your family's life,
> recovery
> > is possible. And who wouldn't do almost anything � mortgage a
home,
> abandon
> > a career or move to be closer to doctors or schools � to enable
an
> autistic
> > child to lead a normal life?
> >
> >
> > Now, as the mother of a 10-year-old, I will say what no parents who
> have
> > just discovered their child is autistic want to hear, but should,
> at least
> > from one person: I've never met a recovered child outside the pages
> of those
> > old books. Not that it doesn't happen; I'm sure it does. But it's
> > extraordinarily rare and it doesn't happen the way we once were led
> to
> > believe.
> >
> >
> > According to her friend, Dr. McCarron was in despair in recent
> weeks because
> > Katherine's language had regressed markedly. Every parent of a
> child on the
> > autism spectrum knows this feeling: I've done everything possible;
> why isn't
> > he better? The answer is simple: Because this is the way autism
> works. There
> > are roadblocks in the brain, mysterious and unmovable. In
> mythologizing
> > recovery, I fear we've set an impossibly high bar that's left the
> parents of
> > a half-million autistic children feeling like failures.
> >
> > I don't mean to sound pessimistic about the prospects for autistic
> children.
> > On the contrary, I see greater optimism in delivering a more
> realistic
> > message to families: Children are not cured, but they do get
> better.
> > ***********
> >
> > ************And better can be remarkable. At 10, my son is a far
> cry from
> > the toddler who melted down when the sand was the wrong texture for
> > drizzling. These days he embraces adventure, rides his bike, and
> repeats any
> > story he tells five or six times. I remember thinking maybe we'd
> laugh
> > someday at the lengths we went to when we were teaching him
> language � the
> > flashcards, the drills, the repetitions. Now he's 10 and talking at
> last in
> > his own quirky ways, and we don't laugh about the drills (though we
> laugh
> > about plenty of other things). Language is a victory. So is
> connection and
> > purposeful play. So are the simpler things: a full night's sleep, a
> > tantrum-free day.
> >
> > Parents working toward these goals will one day be surprised and
> delighted
> > by their children's funny new obsessions, odd fixations, and
> tentative but
> > extraordinary connections with other children. Being more realistic
> from the
> > start might make it possible to enjoy the journey and to see it for
> what it
> > is: helping a child who will always function differently to
> communicate
> > better and feel less frustrated. To aim for full recovery � for
the
> person
> > your child might have been without autism � is to enter a
dangerous
> > emotional landscape. For three children, the disconnect between
> parental
> > determination and limited progress may have been lethal.
> >
> > Cammie McGovern is the author of "Eye Contact," a novel.
> >
>
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

--- Tink <tink.le@...> wrote:

Good work Dodds! Tink, isn't he from your territory?

**** He's Connecticut. Greenspan/Floortime et al kick ass! Get on the
floor and PLAY, Gina! hoo heeeheee!!!!!!!

That's where Gina and her likes belong alright, somewhere that they can
do no harm.

I'll tell you though, those fascist behaviorist types do make good
facilitators.  I'm serious, I saw it for myself.  FC requires a certain
amount of assertivelness of which the fascist behaviorists had both in
their natures and in training.  Of course it requires tenderness and
sensitivity too, but the auties teach them that.

Tom


Tom

>
>
> -----Original Message-----
> From: autismlist@yahoogroups.com
> [mailto:autismlist@yahoogroups.com]On
> Behalf Of Tom Smith
> Sent: Saturday, July 15, 2006 7:05 PM
> To: autism2@yahoogroups.com; Autismfc; Autismlist; Autismlist Google;
> autismlist2@yahoogroups.com
> Subject: [Autismlist] ABA and PBS
>
>
> The post below is from ABA supporters.  They are dead wrong and I
> encourage everyone here to contact their representatives to support
> this bill.
>
> *** lol ... Gina Green is all knot-tied again.  So, basically, she
> says
> positive supports should not be utilized?  Because that's superior to
> ABA!
> :o)     That's the first bug bite she squawks about.  Hm.  Hum.  Fee
> Fi Fo
> Fum.  Looks like the Ogre's cash well has been tapped but good!  It's
> good
> to see that Gina Green is consistently makes the organization appear
> foolish, petty and greedy.  Well, they could all add "PBS" after
> their BSBA
> degree sigs and la-la-la-la life goes on.  However, someone will have
> to
> inservice them on positive supports, I guess.   It's all about the
> money and
> that's bottom line.  Period.  Jot.  Ending dot.  I guess they'll
> always and
> forever be stuck in the box.  It's funny when they pop out they teeny
> tiny
> leetle heads when the money drawer gets rattled and sproinged.
> Consistently
> predictable little Jacks-In-The-Box!
>
> Good work Dodds!  Tink, isn't he from your territory?
>
> **** He's Connecticut.   Greenspan/Floortime et al kick ass!  Get on
> the
> floor and PLAY, Gina!  hoo heeeheee!!!!!!!
>
> :o)
> ~*~ Tink
>
> Tom
>
>
> Fw: URGENT - Proposed Federal Law Threatens ABA
>     Posted by: "Geraldine Bliss" bbliss1@...   totmommy
>     Fri Jul 14, 2006 1:53 pm (PST)
>     Subject: URGENT - Proposed federal law threatens ABA
>
>     Dear Colleagues,
>
>     A bill recently introduced in the U.S. Congress by Sen. Chris
> Dodd
> --SB 3449; Child and Adolescent Mental Health Resiliency Act --
> includes several elements that could jeopardize the practice of
> applied
> behavior analysis. The most serious is specification of positive
> behavioral support (PBS) procedures for children with or at risk for
> mental health problems. As you may know, PBS is being portrayed in
> several contexts as a new "discipline" that is different from, even
> superior to, ABA. Training and certification in ABA are deemed
> unnecessary to practice PBS; inservice workshops are held to suffice
> to
> prepare personnel to deal effectively with problem behavior (for
> documentation, see Johnston, Foxx, Jacobson, Green, & Mulick, 2006,
> The
> Behavior Analyst, Vol. 29, pp. 51-74). Over $22 million in funding is
> being sought for SB3449; if the bill passes, funding will go to PBS
> pr
> actitioners, bypassing applied behavior analysts. The ramifications
> for
> our profession should be obvious.
>
>     A number of concerned behavior analysts and some organizations,
> such as FABA, are working to persuade legislators to replace
> "positive
> behavioral support" with "applied behavior analysis" in this proposed
> legislation. Immediate action is required. If you are concerned,
> PLEASE
> help by contacting legislators immediately, and please pass this
> along
> to other concerned colleagues and consumers of ABA services. What
> follows is some information put together by FABA members and others.
> Highlights of the proposed bill and a link to the full text appear at
> the bottom of this message.
>
>     Thank you for acting on behalf of behavior analysis.
>
>     Sincerely,
>     Gina Green, PhD, BCBA
>     Consultant
>     Business address:
>     6977 Navajo Road
>     PMB #176
>     San Diego, CA 92119
>     619-518-4990
>
>
>     Behavior analysts may have the best chance at getting the
> language
> in bil l 3449 changed by working through the Senate Subcommittee on
> Education and Early Childhood Development. [This is a Subcommittee of
> the Senate Health, Education, Labor and Pensions (HELP) committee.]
>     The Subcommittee Chairman is Senator Lamar Alexander (R-TN) and
> the
> Ranking Member is Senator Christopher Dodd (D-CT).
>     The Subcommittee members are listed by party, high to low rank,
> and
> state at the bottom of this message.
>     Seventeen states are represented by the Subcommittee members: AL,
> CT, GA, IA, MA, NC, NH, NM, NV, NY, OH, TN, RI, UT, VT, WA, WY
>     It is very important to have individual citizens (as
> constituents)
> from the 17 states contact their Senators.
>     Other concerned parties can contact the Subcommittee as a group
> via
> email: help_comments@...
>     Or, people can easily find the email, phone, and postal contacts
> for individual Senators via the "Find Your Senators" button at the
> top
> of the website www.senate.gov.
>
>     Letters to legislator should make a few key points to promote
> ABA,
> but not attack PBS (which already has a strong base of support in
> Washington through OSERS.) Here are some hastily-prepared suggestions
> for key points; your letter should be personalized so that all
> letters
> do not say exactly the same thing:
>     The No Child Left Behind (NCLB) Act stresses the need for
> "evidence-based interventions" (indeed that phrase is used 181 times
> in
> the law). IDEA 2004 emphasizes the use of interventions based on
> scientific research. There is much scientific research supporting
> ABA.
> There is limited scientific research supporting PBS. Children with
> mental health needs deserve interventions based on plenty of sound
> research.
>     PBS has become a sort of brand name. Public law should avoid
> endor
> sing b rand names. ABA is not a brand name; it is a well-defined
> professional discipline.
>     For decades ABA has provided effective and humane interventions
> to
> improve student behavior and learning and family welfare. Competently
> delivered ABA intervention can produce significant reductions in
> violent and unsafe behaviors in schools. ABA also provides a wide
> range
> of powerful applications in schools to improve teaching and learning.
> These include direct instruction, precision teaching, active student
> responding strategies, personalized systems of instruction, and much
> more. ABA is simply much bigger and more effective than PBS.
>
>     There is an internationally recognized professional certification
> in applied behavior analysis that is based on well-established
> standards and requires specific formal training and supervised
> experience. There is no professional credential and there are no
> professional standards for practitioners of PBS. Children and
> adolescents with mental health nee ds des erve to be treated by
> qualified professionals.
>
>     FYI--FOR FUTURE REFERENCE-- PROPOSED SENATE BILL S.3449--CHILD
> AND
> ADOLESCENT MENTAL HEALTH RESILIENCY ACT OF 2006
>     On June 6 Senator Chris Dodd introduced S. 3449 - the "Child and
> Adolescent Mental Health Resiliency Act of 2006" -- You can access
> the
> bill at http://thomas.loc.gov/cgi-bim/thomas and search using S.
> 3449.
>
>     There are three major sections
>     I. State and Community Activities Concerning the Mental Health of
> Children and Adolescents
>     II. Federal Interagency Collaboration and Related Activities
>     III. Research Activities Concerning the Mental Health of Children
> and Adolescents
>
>     Section 103. in part I addresses Activities Concerning Mental
> Health Services in Schools:
>     "SEC. 103. ACTIVITIES CONCERNING MENTAL HEALTH SERVICES IN
> SCHOOLS.< BR>(a) Efforts of Secretary to Improve the Mental Health of
> Students- The Secretary of Education, in collaboration with the
> Secretary of Health and Human Services, shall--
>
>     (1) encourage elementary and secondary schools and educational
> institutions to address mental health issues facing children and
> adolescents by--
>     (A) identifying children and adolescents with, or who are at-risk
> for, mental health disorders;
>     (B) providing or linking children and adolescents to appropriate
> mental health services and supports; and
>     (C) assisting families, including providing families with
> resources
> on mental health services for children and adolescents and a link to
> relevant local and national advocacy and support organizations;
>
>     (2) collaborate on expanding and fostering a mental health
> promotion and early intervention strategy with respect to children
> and
> adolescents that focuses on emotional well being and resiliency and
> fosters academic achievement;
>
>     (3) encourage el ementa ry and secondary schools and educational
> institutions to use positive behavioral support procedures and
> functional behavioral assessments on a school-wide basis as an
> alternative to suspending or expelling children and adolescents with
> or
> who are at risk for mental health needs; and
>
>     (4) provide technical assistance to elementary and secondary
> schools and educational institutions to implement the provisions of
> paragraphs (1) through (3).
>
>     (b) Grants-
>     (1) IN GENERAL- The Secretary of Education, in collaboration with
> the Secretary of Health and Human Services, shall award grants to, or
> enter into cooperative agreements with, States, political
> subdivisions
> of States, consortium of political subdivisions, tribal
> organizations,
> public organizations, private nonprofit organizations, elementary and
> secondary schools, and other educational institutions to provide
> directly or provide access to mental health services and case
> management of services in elementary and sec ondary schools and other
> educational settings.
>
>     (2) APPLICATION- To be eligible to receive a grant or cooperative
> agreement under paragraph (1) an entity shall--
>
>     (A) be a State, a political subdivision of a State, a consortia
> of
> political subdivisions, a tribal organization, a public organization,
> a
> private nonprofit organization, an elementary or secondary school, or
> an educational institution; and
>
>     (B) prepare and submit to the Secretary an application at such
> time, in such manner, and containing such information as the
> Secretary
> may require, including an assurance that the entity will--
>
>     (i) provide directly or provide access to early intervention and
> prevention services in settings with an above average rate of
> children
> and adolescents with mental health disorders;
>
>     (ii) provide directly or provide access to early intervention and
> prevention services in settings with an above average rate of
> children
> and adolescents with co-occurring mental healt h and substance abuse
> disorders; and (iii) demonstrate a broad collaboration of parents,
> primary care professionals, school and mental health professionals,
> child care processionals including those in educational settings,
> legal
> guardians, and all relevant local agencies and organizations in the
> application for, and administration of, the grant or cooperative
> agreement.
>
>     (3) USE OF FUNDS- An entity shall use amounts received under a
> grant or cooperative agreement under this subsection to provide--
>
>     (A) mental health identification services;
>     (B) early intervention and prevention services to children and
> adolescents with or who are at-risk of mental health disorders; and
>     (C) mental health-related training to primary care professionals,
> school and mental health professionals, and child care professionals,
> including those in educational settings.
>
>     (c) Counseling and Behavioral Support Guidelines-
>     The Secretary of Education, in collaboration with the Secreta ry
> of
> Health and Human Services, shall develop and issue guidelines to
> elementary and secondary schools and educational institutions that
> encourage such schools and institutions to provide counseling and
> positive behavioral supports, including referrals for needed early
> intervention and prevention services, treatment, and rehabilitation
> to
> children and adolescents who are disruptive or who use drugs and show
> signs or symptoms of mental health disorders. Such schools and
> institutions shall be encouraged to provide such services to children
> and adolescents in lieu of suspension, expulsion, or transfer to a
> juvenile justice system without any support referral services or
> system
> of care.
>
>     (d) Study-
>     (1) IN GENERAL- The Government Accountability Office shall
> conduct
> a study to assess the scientific validity of the Federal definition
> of
> a child or adolescent with an `emotional disturbance' as provided for
> in the regulations of the Department of Education under the
> Individuals
> w ith Di sabilities Education Act (20 U.S.C. 1400 et seq.), and
> whether, as written, such definition now excludes children and
> adolescents inappropriately through a determination that those
> children
> and adolescents are `socially maladjusted'.
>
>     (2) REPORT- Not later than 1 year after the date of enactment of
> this Act, the Government Accountability Office shall submit to the
> appropriated committees of Congress a report concerning the results
> of
> the study conducted under paragraph (1).
>
>     (e) Rule of Construction- Nothing in this section shall be
> construed--
>     (1) to supersede the provisions of section 444 of the General
> Education Provisions Act (20 U.S.C. 1232g), including the requirement
> of prior parental consent for the disclosure of any education
> records;
> and
>     (2) to modify or affect the parental notification requirements
> for
> programs authorized under the Elementary and Secondary Education Act
> of
> 1965 (20 U.S.C. 6301 et seq.).
>
>     (f) Authorization of Appropriat ions- There is authorized to be
> appropriated to carry out this section $22,500,000 for fiscal year
> 2007, and such sums as may be necessary for each of fiscal years 2008
> through 2011.
>
>     NOTE: The material provided in this OSDFS PREVENTION NEWS UPDATE
> is
> for informational purposes only. The opinions expressed herein may
> not
> always reflect the views of the Office of Safe and Drug-Free Schools
> or
> the US Department of Education, nor do they imply an endorsement. We
> hope that you find this information to be useful in your work with
> the
> prevention community.
>
>
>     CONFIDENTIALITY NOTICE: This message and any attachments are for
> the sole
>     use of the intended recipient(s) and may contain confidential and
>     privileged information that is exempt from public disclosure. Any
>     unauthorized review, use, disclosure, or distribution is
> prohibited. If
>     you have received this message in error please contact the sender
> (by phone
>     or reply electronic mail) and then destroy all copies of th e
> original
>     message.
>
>     Gina Green, PhD, BCBA
>     Consultant
>     Business address:
>     6977 Navajo Road
>     PMB #176
>     San Diego, CA 92119
>     619-518-4990
>
>
>
>
> __________________________________________________
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--- Tink <tink.le@...> wrote:

> I'd like to know more about your son.  Some 7 yr old children cry
> because
> they *feel* different, regardless of being autistic or not.  Many 7
> yr. olds
> wonder about differences, the things that make people different, and
> fear
> being laughed at.  It's sort of a developmental milestone.    I'll
> agree
> with Tom's nicely stated observations that most of the grief
> experienced by
> our autistic (and other abled) kids is because of the "defective"
> message
> they hear over and over.  Who's at fault for that?  Lots of us.
> Let's stop
> it.

Yes, it has to stop.  It's the one PC thing the past thirty years that
made sense to me.  We were forbidden to talk that way where I worked
with DD's off and on for the past 25 years.  Then I come on the net and
parents are joyously dissing their kids.  It's disgusting and
disasterous for their kids who they are supposed to be protecting.

> Always have felt it important to understand that emotionally as
> well as
> physically, autistic kids are going to reach more typical milestones.

They told me through FC they go through all the same stuff we do, it
just comes out differently.  Their human for crissakes and we know
through brain studies and traumatic injury that the person remains and
only skill are effected, and even not that much for many.  Auties not
only don't have traumatic brain injury, there's substantial evidence
some structures are superior!!

>  It
> just happens at different times and sometimes they're subtle.  So
> subtle
> that because some are constantly focused on the "disability" or
> "challenge" --- those milestones are missed.  And not celebrated.
> And
> that's horrible.  For child and parent.  We become so immersed in the
> medea
> and " behaviroal autism expert's" well-encouraged pity party, that we
> forget
> to remember LIFE.

Hear, hear!

> Our 9 yr. old son was just "formally" diagnosed Asperger's or some
> type of
> Autism Spectrum/DD.  Jury's still out.  8 yr. old son was dx'd
> "classic" or
> "typical Kanner's type" autism by age 4.  He remains non-verbal, but
> not
> without language.  It just comes out in other ways and other
> expressions.

Much better to my highly atuned to autie ears.

> Ben has yet to gain control of bowel and bladder function.  7 yr. old
> daughter has other challenges such as speech impediment, dyspraxia,
> dyslexias.  All 3 children have important sensory disturbances and we
> work
> toward easing those areas so that they can focus in other ways.  I
> don't say
> "You gag at the smell of warm cheese because you're autistic."  I say
> "You
> gag at the smell of warm cheese, because to you it smells horrible.
> Your
> nose smells things in a different way than some people.  I gag at the
> smell
> of XXXXX, because of how my nose senses that odor."  That type of
> thing.
> When asked if they would want to be any different as "people" ... how
> they
> think, feel, react to life .... none of the three would want to be
> anything
> else or any other "way."

Exactly and it doesn't take a rocket scientist to know that.  Just
alittle life and wisdom.

> Most important was that we've been aware of their abilities and
> challenges
> and focus on the abilities, working around the challenges.  I've been
> very
> clear from the beginning with all three children that Autism runs a
> wide
> range of abilities and just because someone says or writes "autistic"
> on
> this day, doesn't make them any different than they have been on any
> other
> day.  It's a label and it serves two purposes, neither of which
> should
> *have* to be necessary:   1.  To appease the health insurers when
> services
> are needed. and 2.  To assist the school system in planning services.
> *disclaimer*:  This is only Tink's opinion and should in no way be
> construed
> as expert or sane writing.  ;o)
>
> Again, it would be great to know more about your son, Ronda, and
> understand
> where he's having the hard time.  Maybe we can offer some concrete
> suggestions to boost his self-esteem/self-image!

I second that.

Tom

> Our Best,
> Tink and Children (Orion, Ben, Sarah)
>
> -----Original Message-----
> From: autismlist@yahoogroups.com
> [mailto:autismlist@yahoogroups.com]On
> Behalf Of Tom Smith
> Sent: Sunday, July 16, 2006 2:45 PM
> To: autismlist@yahoogroups.com
> Subject: Autismlist Inservice #1...RE: [Autismlist] Re: [AutDads] Fw:
> Neuroscientist So Close To Autism Breakthrough He's Helping Fund
> Research
>
>
>
>
>
> --- Ronda Feeney <rondaf@...> wrote:
>
> > I�m new to this list and have got a lot to learn about Autism
>
> I appreciate you coming here to learn.  I have worked diligently in
> autism and related fields for 35 years.  I hope I can help.
>
> > but I
> > would
> > welcome a cure for my 7 year old, he spends days crying because he
> > knows he
> > is different
>
> ...And because he's reminded of it every second of the day, often in
> dramatic and tragic ways by most everyone around him.   Can you
> imagine
> how that feels?  When I was that age I had a bed wetting problem
> which
> I thought was permanent and would cause me never to be able to marry
> and have children.  Oddly I didn't care about any other functional
> part
> of my existence though that was also in question.  My mother didn't
> make a big deal of it and if she had that would have been the worse
> part of the whole thing.
>
> > but cant figure out why.
>
> YOU can't figure out why.  He may very well know the situation better
> than you can imagine.
>
>
> > It breaks my heart to watch
> > his
> > struggle with reading and writing when the other kids are doing so
> > much
> > more.
>
> It breaks his heart you feeling that way and being upset over it.
>
> > I can�t see he is better off the way he is.
>
> Are you better off the way you are?  He's who he is and you are who
> you
> are.  The problem is of mutual appreciation which granted is affected
> by his communication problem, but that's all. Thanks to FC for some
> of
> us here and just the good nature of some others, we were able to
> overcome the communication problem and in the process learn that
> people
> with severe autism are just the opposite of how they appear.  They
> are
> in fact very intelligent, knowledgeable and aware.   Their condition
> also gives them special abilities that benefit all of us.
>
>
> If autism was cured, which in fact means eliminated, the absence of
> them and their special abilites would doom all of us.  God put us all
> here for a reason.  The challenge of autism is the critical challenge
> of humanity.  It's all about love.  Autism is so difficult for many
> of
> us because love is so difficult for all of us.  Love is THE winner
> every time.
>
> That may sound hyperbolic or over the top, but so is autism relative
> to
> the human condition.  That can be a good thing like we think or a bad
> thing like the curebies think.  The FACT is no one knows collectively
> for sure and for that reason any talk of cure is at least unethical
> and
> at worse dangerously fascistic.
>
> Twenty years ago no advocates, or even parents in my experience,
> would
> dare talk the way your talking now, publically at least.  The past
> ten
> years it has become not only accepted, but the camp in autism who
> beleives like this has run rough shod over the rest of us and
> consistently get their way.  It's been the most damaging movement in
> the hisory of autism and if they keep getting their way it not only
> continues the damage to autistics, but some of us believe has dire
> consequences for all of us.
>
> Let's give people with autism the benefit of a doubt.  The rest of us
> get it.  It's only fair and just.
>
> Now, that was lesson number one on the autismlist's inservice on
> autism.    More to come.  Please stay around and I hope it helps you
> and many others.  I saw what happenned in autism the past thirty
> years.
>  I had no ax to grind but was just a witness.  Being a lowly worker
> has
> it's advantages.  The camps in autism might as well have been on
> Venus
> for all I was concerned, but I couldn't help conclude as the years
> wore
> on that the positive approaches people, though sinners like the rest
> of
> us and maybe worse, were right about how to approach autism.  Maybe
> them being right was part of a necessary redemption.  In any case,
> let's not any of us make a big deal out of being right or wrong.  The
> auties wouldn't like that.  They run entirely on love.
>
> Tom
>
>
> --- Ronda Feeney <rondaf@...> wrote:
>
> > I�m new to this list and have got a lot to learn about Autism but
> I
> > would
> > welcome a cure for my 7 year old, he spends days crying because he
> > knows he
> > is different
>
> ...And because he's reminded of it every second of the day, often in
> dramatic and tragic ways by most everyone around him.   Can you
> imagine
> how that feels?  When I was that age I had a bed wetting problem
> which
> I thought was permanent and would cause me never to be able to marry
> and have children.  Oddly I didn't care about any other functional
> part
> of my existence though that was also in question.  My mother didn't
> make a big deal of it and if she had that would have been the worse
> part of the whole thing.
>
> > but cant figure out why.
>
> YOU can't figure out why.  He may very well know the situation better
> than you can imagine.
>
>
>
> > Ronda Feeney
> > rondaf@...
> >
> > -----Original Message-----
> > From: autismlist@yahoogroups.com
> > [mailto:autismlist@yahoogroups.com]On
> > Behalf Of Tom Smith
> > Sent: Sunday, 16 July 2006 9:18 AM
> > To: AutDads@yahoogroups.com; autismlist@yahoogroups.com
> > Subject: [Autismlist] Re: [AutDads] Fw: Neuroscientist So Close To
> > Autism
> > Breakthrough He's Helping Fund Research
> >
> > What an idiot. He wants to fix something that apparently is better.
> > Go figure.
> >
> > Wouldn't it be better to find a way to get at this greater
> > potentiality?
> >
> > This sort of thing is a pattern. Scientists see the brain
> differences
> > in autism which could more easily be interpreted as superior than
> > something causing retardation, but then they look at the subjects
> and
> > it doesn't jive. So they interpret it the way they see the subject,
> > thereby totally negating their scientific approach.
> >
> > Tom
> >
> > --- Mark Knox < mknox@... <mailto:mknox%40epix.net> > wrote:
> >
> > > Certainly not the first time we've heard of a pending "cure" but
> > hope
> > > for progress nonetheless.
> > > Mark
> > > ----- Original Message -----
> > > From: AutismLink
> > > To: mknox@... <mailto:mknox%40epix.net>
> > > Sent: Saturday, July 15, 2006 1:14 AM
> > > Subject: Neuroscientist So Close To Autism Breakthrough He's
> > Helping
> > > Fund Research
> > >
> > >
> > >
> > >
> > > Brought to you by AutismLink
> > >
> > ----------------------------------------------------------
> > > UofL Neuroscientist So Close To Autism Breakthrough He's Helping
> > > Fund Research
> > >
> > > July 14, 2006 11:48 AM
> > > http://www.wave3.com/Global/story.asp?S=5146301&nav=menu31_3
> > <http://www.wave3.com/Global/story.asp?S=5146301&nav=menu31_3>
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > By Lori Lyle
> > >
> > > (LOUISVILLE) -- New findings could mean an incredible treatment
> for
> > > people with autism -- so incredible that a researcher at the
> > > University of Louisville is digging into his own pockets to make
> it
> > > happen as quickly as possible. WAVE 3 Medical Reporter Lori Lyle
> > has
> > > more in this exclusive report.
> > >
> > > Dr. Manuel Casanova, a neuroscientist at the University of
> > > Louisville, is passionate about his research. His most recent
> > > published study finds drastic differences in the brains of
> autistic
> > > individuals. And now, with this knowledge, he's eager to move to
> > the
> > > next step: treatment.
> > >
> > > The breakthrough discovery is the result of a 3-year study
> > involving
> > > top scientists around the world.
> > >
> > > Dr. Casanova's team at the University of Louisville was
> responsible
> > > for conducting the study that analyzed tissue from 12 brains --
> six
> > > of them taken from people with autism.
> > >
> > > He says the results are unquestionable, and explain symptoms
> > > exhibited from autistic patients, such as trouble speaking.
> > >
> > > "It means that we have uncovered something very important,
> because
> > it
> > > has explanatory powers," Casanova says.
> > >
> > > The brain strands or minicolumns of autism patients have more
> > cells,
> > > but they are narrower and more densely packed -- which can limit
> > the
> > > brain's ability to send messages.
> > >
> > > Dr. Casanova says that's because "there's not enough juice to
> > > actually power very long connections in the brain."
> > >
> > > Examining tissues from a normal brain and the brain of an
> autistic
> > > person, Dr. Casanova explains the differences. "The more bluish
> > > staining actually means more cells present," he says.
> > >
> > > More cells and smaller cells, making up tiny brain strands, or
> > > minicolumns. These minicolums take in information, process it and
> > > respond to it.
> > >
> > > But the increased amount of cells works to increase other
> abilities
> > > -- like mathematics.
> > >
> > > Armed with this knowledge, Dr. Casanova is ready to begin working
> > on
> > > wiping out autism entirely. "Knowing the pathology, what is wrong
> > > with the brains of autistic individuals, opens the door to
> > potential
> > > strategies that may actually even lead to a cure."
> > >
> > > Dr. Casanova's first step: developing a brain stimulator to
> bulk-up
> > > the brain strands. And he feels so strongly about the potential
> > that
> > > he's ready to pay for it with his own money. "I approached the
> > > university, told them I needed equipment for preliminary studies
> > and
> > > I would match the money with my own money."
> > >
> > > The cost for the equipment that could forever change the
> diagnosis
> > of
> > > autism: $40,000. Dr. Casanova is confident he's on the verge of a
> > > major breakthrough. "Something good is about to happen," he said.
> > >
> > > Prevention is of course the main goal for a cure, and Dr.
> Casanova
> > is
> > > working on that, too. He says research findings so far point to
> > both
> > > genetics and the environment.
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > ----------------------------------------------------------
> > >
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Let me see here, do I have this correct:  Gina Green wants me to write to
legislators to say that Positive Behavioral Support should NOT replace ABA
programs????

Um, I think not!
Char

-----Original Message-----
From: autismlist@yahoogroups.com [mailto:autismlist@yahoogroups.com]On
Behalf Of Tom Smith
Sent: Saturday, July 15, 2006 7:05 PM
To: autism2@yahoogroups.com; Autismfc; Autismlist; Autismlist Google;
autismlist2@yahoogroups.com
Subject: [Autismlist] ABA and PBS


The post below is from ABA supporters.  They are dead wrong and I
encourage everyone here to contact their representatives to support
this bill.

*** lol ... Gina Green is all knot-tied again.  So, basically, she says
positive supports should not be utilized?  Because that's superior to ABA!
:o)     That's the first bug bite she squawks about.  Hm.  Hum.  Fee Fi Fo
Fum.  Looks like the Ogre's cash well has been tapped but good!  It's good
to see that Gina Green is consistently makes the organization appear
foolish, petty and greedy.  Well, they could all add "PBS" after their BSBA
degree sigs and la-la-la-la life goes on.  However, someone will have to
inservice them on positive supports, I guess.   It's all about the money and
that's bottom line.  Period.  Jot.  Ending dot.  I guess they'll always and
forever be stuck in the box.  It's funny when they pop out they teeny tiny
leetle heads when the money drawer gets rattled and sproinged.  Consistently
predictable little Jacks-In-The-Box!

Good work Dodds!  Tink, isn't he from your territory?

**** He's Connecticut.   Greenspan/Floortime et al kick ass!  Get on the
floor and PLAY, Gina!  hoo heeeheee!!!!!!!

:o)
~*~ Tink

Tom


Fw: URGENT - Proposed Federal Law Threatens ABA
     Posted by: "Geraldine Bliss" bbliss1@...   totmommy
     Fri Jul 14, 2006 1:53 pm (PST)
     Subject: URGENT - Proposed federal law threatens ABA

     Dear Colleagues,

     A bill recently introduced in the U.S. Congress by Sen. Chris Dodd
--SB 3449; Child and Adolescent Mental Health Resiliency Act --
includes several elements that could jeopardize the practice of applied
behavior analysis. The most serious is specification of positive
behavioral support (PBS) procedures for children with or at risk for
mental health problems. As you may know, PBS is being portrayed in
several contexts as a new "discipline" that is different from, even
superior to, ABA. Training and certification in ABA are deemed
unnecessary to practice PBS; inservice workshops are held to suffice to
prepare personnel to deal effectively with problem behavior (for
documentation, see Johnston, Foxx, Jacobson, Green, & Mulick, 2006, The
Behavior Analyst, Vol. 29, pp. 51-74). Over $22 million in funding is
being sought for SB3449; if the bill passes, funding will go to PBS pr
actitioners, bypassing applied behavior analysts. The ramifications for
our profession should be obvious.

     A number of concerned behavior analysts and some organizations,
such as FABA, are working to persuade legislators to replace "positive
behavioral support" with "applied behavior analysis" in this proposed
legislation. Immediate action is required. If you are concerned, PLEASE
help by contacting legislators immediately, and please pass this along
to other concerned colleagues and consumers of ABA services. What
follows is some information put together by FABA members and others.
Highlights of the proposed bill and a link to the full text appear at
the bottom of this message.

     Thank you for acting on behalf of behavior analysis.

     Sincerely,
     Gina Green, PhD, BCBA
     Consultant
     Business address:
     6977 Navajo Road
     PMB #176
     San Diego, CA 92119
     619-518-4990


     Behavior analysts may have the best chance at getting the language
in bil l 3449 changed by working through the Senate Subcommittee on
Education and Early Childhood Development. [This is a Subcommittee of
the Senate Health, Education, Labor and Pensions (HELP) committee.]
     The Subcommittee Chairman is Senator Lamar Alexander (R-TN) and the
Ranking Member is Senator Christopher Dodd (D-CT).
     The Subcommittee members are listed by party, high to low rank, and
state at the bottom of this message.
     Seventeen states are represented by the Subcommittee members: AL,
CT, GA, IA, MA, NC, NH, NM, NV, NY, OH, TN, RI, UT, VT, WA, WY
     It is very important to have individual citizens (as constituents)
from the 17 states contact their Senators.
     Other concerned parties can contact the Subcommittee as a group via
email: help_comments@...
     Or, people can easily find the email, phone, and postal contacts
for individual Senators via the "Find Your Senators" button at the top
of the website www.senate.gov.

     Letters to legislator should make a few key points to promote ABA,
but not attack PBS (which already has a strong base of support in
Washington through OSERS.) Here are some hastily-prepared suggestions
for key points; your letter should be personalized so that all letters
do not say exactly the same thing:
     The No Child Left Behind (NCLB) Act stresses the need for
"evidence-based interventions" (indeed that phrase is used 181 times in
the law). IDEA 2004 emphasizes the use of interventions based on
scientific research. There is much scientific research supporting ABA.
There is limited scientific research supporting PBS. Children with
mental health needs deserve interventions based on plenty of sound
research.
     PBS has become a sort of brand name. Public law should avoid endor
sing b rand names. ABA is not a brand name; it is a well-defined
professional discipline.
     For decades ABA has provided effective and humane interventions to
improve student behavior and learning and family welfare. Competently
delivered ABA intervention can produce significant reductions in
violent and unsafe behaviors in schools. ABA also provides a wide range
of powerful applications in schools to improve teaching and learning.
These include direct instruction, precision teaching, active student
responding strategies, personalized systems of instruction, and much
more. ABA is simply much bigger and more effective than PBS.

     There is an internationally recognized professional certification
in applied behavior analysis that is based on well-established
standards and requires specific formal training and supervised
experience. There is no professional credential and there are no
professional standards for practitioners of PBS. Children and
adolescents with mental health nee ds des erve to be treated by
qualified professionals.

     FYI--FOR FUTURE REFERENCE-- PROPOSED SENATE BILL S.3449--CHILD AND
ADOLESCENT MENTAL HEALTH RESILIENCY ACT OF 2006
     On June 6 Senator Chris Dodd introduced S. 3449 - the "Child and
Adolescent Mental Health Resiliency Act of 2006" -- You can access the
bill at http://thomas.loc.gov/cgi-bim/thomas and search using S. 3449.

     There are three major sections
     I. State and Community Activities Concerning the Mental Health of
Children and Adolescents
     II. Federal Interagency Collaboration and Related Activities
     III. Research Activities Concerning the Mental Health of Children
and Adolescents

     Section 103. in part I addresses Activities Concerning Mental
Health Services in Schools:
     "SEC. 103. ACTIVITIES CONCERNING MENTAL HEALTH SERVICES IN
SCHOOLS.< BR>(a) Efforts of Secretary to Improve the Mental Health of
Students- The Secretary of Education, in collaboration with the
Secretary of Health and Human Services, shall--

     (1) encourage elementary and secondary schools and educational
institutions to address mental health issues facing children and
adolescents by--
     (A) identifying children and adolescents with, or who are at-risk
for, mental health disorders;
     (B) providing or linking children and adolescents to appropriate
mental health services and supports; and
     (C) assisting families, including providing families with resources
on mental health services for children and adolescents and a link to
relevant local and national advocacy and support organizations;

     (2) collaborate on expanding and fostering a mental health
promotion and early intervention strategy with respect to children and
adolescents that focuses on emotional well being and resiliency and
fosters academic achievement;

     (3) encourage el ementa ry and secondary schools and educational
institutions to use positive behavioral support procedures and
functional behavioral assessments on a school-wide basis as an
alternative to suspending or expelling children and adolescents with or
who are at risk for mental health needs; and

     (4) provide technical assistance to elementary and secondary
schools and educational institutions to implement the provisions of
paragraphs (1) through (3).

     (b) Grants-
     (1) IN GENERAL- The Secretary of Education, in collaboration with
the Secretary of Health and Human Services, shall award grants to, or
enter into cooperative agreements with, States, political subdivisions
of States, consortium of political subdivisions, tribal organizations,
public organizations, private nonprofit organizations, elementary and
secondary schools, and other educational institutions to provide
directly or provide access to mental health services and case
management of services in elementary and sec ondary schools and other
educational settings.

     (2) APPLICATION- To be eligible to receive a grant or cooperative
agreement under paragraph (1) an entity shall--

     (A) be a State, a political subdivision of a State, a consortia of
political subdivisions, a tribal organization, a public organization, a
private nonprofit organization, an elementary or secondary school, or
an educational institution; and

     (B) prepare and submit to the Secretary an application at such
time, in such manner, and containing such information as the Secretary
may require, including an assurance that the entity will--

     (i) provide directly or provide access to early intervention and
prevention services in settings with an above average rate of children
and adolescents with mental health disorders;

     (ii) provide directly or provide access to early intervention and
prevention services in settings with an above average rate of children
and adolescents with co-occurring mental healt h and substance abuse
disorders; and (iii) demonstrate a broad collaboration of parents,
primary care professionals, school and mental health professionals,
child care processionals including those in educational settings, legal
guardians, and all relevant local agencies and organizations in the
application for, and administration of, the grant or cooperative
agreement.

     (3) USE OF FUNDS- An entity shall use amounts received under a
grant or cooperative agreement under this subsection to provide--

     (A) mental health identification services;
     (B) early intervention and prevention services to children and
adolescents with or who are at-risk of mental health disorders; and
     (C) mental health-related training to primary care professionals,
school and mental health professionals, and child care professionals,
including those in educational settings.

     (c) Counseling and Behavioral Support Guidelines-
     The Secretary of Education, in collaboration with the Secreta ry of
Health and Human Services, shall develop and issue guidelines to
elementary and secondary schools and educational institutions that
encourage such schools and institutions to provide counseling and
positive behavioral supports, including referrals for needed early
intervention and prevention services, treatment, and rehabilitation to
children and adolescents who are disruptive or who use drugs and show
signs or symptoms of mental health disorders. Such schools and
institutions shall be encouraged to provide such services to children
and adolescents in lieu of suspension, expulsion, or transfer to a
juvenile justice system without any support referral services or system
of care.

     (d) Study-
     (1) IN GENERAL- The Government Accountability Office shall conduct
a study to assess the scientific validity of the Federal definition of
a child or adolescent with an `emotional disturbance' as provided for
in the regulations of the Department of Education under the Individuals
w ith Di sabilities Education Act (20 U.S.C. 1400 et seq.), and
whether, as written, such definition now excludes children and
adolescents inappropriately through a determination that those children
and adolescents are `socially maladjusted'.

     (2) REPORT- Not later than 1 year after the date of enactment of
this Act, the Government Accountability Office shall submit to the
appropriated committees of Congress a report concerning the results of
the study conducted under paragraph (1).

     (e) Rule of Construction- Nothing in this section shall be
construed--
     (1) to supersede the provisions of section 444 of the General
Education Provisions Act (20 U.S.C. 1232g), including the requirement
of prior parental consent for the disclosure of any education records;
and
     (2) to modify or affect the parental notification requirements for
programs authorized under the Elementary and Secondary Education Act of
1965 (20 U.S.C. 6301 et seq.).

     (f) Authorization of Appropriat ions- There is authorized to be
appropriated to carry out this section $22,500,000 for fiscal year
2007, and such sums as may be necessary for each of fiscal years 2008
through 2011.

     NOTE: The material provided in this OSDFS PREVENTION NEWS UPDATE is
for informational purposes only. The opinions expressed herein may not
always reflect the views of the Office of Safe and Drug-Free Schools or
the US Department of Education, nor do they imply an endorsement. We
hope that you find this information to be useful in your work with the
prevention community.


     CONFIDENTIALITY NOTICE: This message and any attachments are for
the sole
     use of the intended recipient(s) and may contain confidential and
     privileged information that is exempt from public disclosure. Any
     unauthorized review, use, disclosure, or distribution is
prohibited. If
     you have received this message in error please contact the sender
(by phone
     or reply electronic mail) and then destroy all copies of th e
original
     message.

     Gina Green, PhD, BCBA
     Consultant
     Business address:
     6977 Navajo Road
     PMB #176
     San Diego, CA 92119
     619-518-4990




__________________________________________________
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Tired of spam?  Yahoo! Mail has the best spam protection around
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Yahoo! Groups Links

Dear Ms Dreaming,

I missed you.  Welcome back.

I liked this article Tink sent too.  What you were saying about
expectations in the context of the odd family you were raised in is
significant I think.  It can aply to community also.  I was raised two
blocks away from where my mother grew up and often listened to her
talking to others in the neighborhood or family about people in the old
neighborhood and their oddities and how things turned out.  We are all
so disconnected these days and lose perspective.

Tom

--- autisticdreaming <autisticdreaming@...> wrote:

> i think this hit right on target. i feel so happy for what we're
> accomplishing here but when i read such disheartening news i get so
> deflated. i wonder why? why? i guess we're lucky i know our motto
> amongst many, we've never had many expectations being an all around
> odd and strange family so we haven't suffered as much
> dissapointments. i guess it's a lucky thing none of us ever talked
> younger than three.
>
> i've gone to the alternative education conference it was amazing..
> i'm going to the cohousing conference where we'll learn how to
> successfully form, how to fund and run an intentional community here
> in floridaland...
>
> we've already got a huge chunk of land already and already some
> peoples are starting out buying trailers and moving up there. so i'm
> back and forth mostly.  what can we do. just move on i guess. i still
>
> wonder why? why? i guess i'll never fully understand. my kid has
> autism shit and she's got rett syndrome too. it's awful. but as long
> as she's happy i don't care that she needs assistance with 90 percent
>
> of her daily functions. now she got so many people other than me
> that's there for her. i know she'll always be okay. we have our
> terrible times that pass into good times we just hang on for the ride
>
> we don't know how to do anything else. we even buried some of our
> children, whom we fought for more time but still slipped away.. we've
>
> had to deal with autism, cerebral palsy, and more.. we've had to push
>
> wheelchairs and change diapers well into the teens. but we still
> lived life. how people can be so selfish to not see beyond their
> situation, another father here in miami threw his sons out a hotel
> window just to spite his wife. they weren't autistic but peoples
> selfishness exceeds no bounds. people get crazy when things don't go
> the way they want. like it must be this way or else they just snap.
> people are so frightening sometimes. you never know who is going to
> lose it.
>
> but i liked this article alot. we need more of this about. i just
> cried something awfull about the dad and his son.
>
> crabtail
>
>
> --- In autismlist@yahoogroups.com, "Tink" <tink.le@...> wrote:
> >
> > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?
> _r=1&oref=slogin
> > New York Times:  Editorials
> > Op-Ed Contributor
> > Autism's Parent Trap
> > Sign In to E-Mail This Print Save
> >
> > By CAMMIE McGOVERN
> > Published: June 5, 2006
> > IN recent weeks, three stories have hit the news with grimly
> similar
> > plotlines: parents accused of killing their autistic children.
> >
> > On April 12, in Hull, England, Alison Davies and her 12-year-old
> son, Ryan,
> > fell to their deaths from a bridge over the River Humber, in an
> apparent
> > murder-suicide. (A note was found in Ms. Davies's kitchen.) On May
> 14, in
> > Albany, Ore., Christopher DeGroot, 19, was trapped inside a burning
> > apartment. He died in a Portland hospital five days later, and his
> parents
> > are charged with murder, accused of locking their son in the
> apartment
> > alone. And on the same May Sunday, in Morton, Ill., Dr. Karen
> McCarron
> > admitted to the police that she had, the day before, suffocated her
> > 3-year-old daughter, Katherine, with a plastic garbage bag.
> >
> > Family and friends have come to the defense of two of the parents
> involved.
> > "Ryan was the focus and the purpose of her life," Alison Davies's
> sister
> > told The Sunday Times, calling the double bridge jump "an act of
> love."
> >
> > A friend of Dr. McCarron's � a fellow member of her local autism-
> support
> > group � told a columnist for The Journal Star of Peoria, Ill.,
that
>
> Dr.
> > McCarron had devoted her life to Katherine. "She never took a night
>
> off,"
> > the friend said. "She read every book. She was trying so hard,
> pursuing
> > every lead."
> >
> > Chilling words to any parent of a child with autism who remembers,
> as I do,
> > reading every book, pursuing every lead and never taking a night
> off �
> > because autism feels like a war you re-arm yourself nightly to
> wage. The
> > comments suggest the parents may have been trying too hard. Perhaps
>
> they
> > were frustrated that their efforts did not lead to greater
> improvement in
> > their children. That would not be surprising, because dramatic
> improvement
> > is what too many parents are led to expect.
> >
> > Clearly there is a message in the recent deaths about the urgent
> need to
> > increase support for the rising number of families struggling with
> autism.
> > Having an autistic child is estimated to cost a family $10,000 to
> $50,000 a
> > year in out-of-pocket expenses for medical treatment, therapy and
> education.
> > With 50 new diagnoses of autism in this country every day, support
> services
> > are already too stretched to meet the need.
> >
> > But as much as I'd like to fault government policy, I suspect it is
>
> not
> > entirely to blame. There's another issue that hits closer to home
> and is
> > harder for most parents of autistic children to be candid about.
> When your
> > child is initially diagnosed, you read the early bibles of
> hope: "Let Me
> > Hear Your Voice," "Son-Rise" and other chronicles of total recovery
>
> from
> > autism. Hope comes from a variety of treatments, but the message is
>
> the
> > same: If you commit all your time, your money, your family's life,
> recovery
> > is possible. And who wouldn't do almost anything � mortgage a
home,
>
> abandon
> > a career or move to be closer to doctors or schools � to enable
an
> autistic
> > child to lead a normal life?
> >
> >
> > Now, as the mother of a 10-year-old, I will say what no parents who
>
> have
> > just discovered their child is autistic want to hear, but should,
> at least
> > from one person: I've never met a recovered child outside the pages
>
> of those
> > old books. Not that it doesn't happen; I'm sure it does. But it's
> > extraordinarily rare and it doesn't happen the way we once were led
>
> to
> > believe.
> >
> >
> > According to her friend, Dr. McCarron was in despair in recent
> weeks because
> > Katherine's language had regressed markedly. Every parent of a
> child on the
> > autism spectrum knows this feeling: I've done everything possible;
> why isn't
> > he better? The answer is simple: Because this is the way autism
> works. There
> > are roadblocks in the brain, mysterious and unmovable. In
> mythologizing
> > recovery, I fear we've set an impossibly high bar that's left the
> parents of
> > a half-million autistic children feeling like failures.
> >
> > I don't mean to sound pessimistic about the prospects for autistic
> children.
> > On the contrary, I see greater optimism in delivering a more
> realistic
> > message to families: Children are not cured, but they do get
> better.
> > ***********
> >
> > ************And better can be remarkable. At 10, my son is a far
> cry from
> > the toddler who melted down when the sand was the wrong texture for
> > drizzling. These days he embraces adventure, rides his bike, and
> repeats any
> > story he tells five or six times. I remember thinking maybe we'd
> laugh
> > someday at the lengths we went to when we were teaching him
> language � the
> > flashcards, the drills, the repetitions. Now he's 10 and talking at
>
> last in
> > his own quirky ways, and we don't laugh about the drills (though we
>
> laugh
> > about plenty of other things). Language is a victory. So is
> connection and
> > purposeful play. So are the simpler things: a full night's sleep, a
> > tantrum-free day.
> >
> > Parents working toward these goals will one day be surprised and
> delighted
> > by their children's funny new obsessions, odd fixations, and
> tentative but
> > extraordinary connections with other children. Being more realistic
>
> from the
> > start might make it possible to enjoy the journey and to see it for
>
> what it
> > is: helping a child who will always function differently to
> communicate
> > better and feel less frustrated. To aim for full recovery � for
the
>
> person
> > your child might have been without autism � is to enter a
dangerous
> > emotional landscape. For three children, the disconnect between
> parental
> > determination and limited progress may have been lethal.
> >
> > Cammie McGovern is the author of "Eye Contact," a novel.
> >
>
>
>
>
>
>


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--- Tink <tink.le@...> wrote:

>
http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?_r=1&oref=slogin
> New York Times:  Editorials
> Op-Ed Contributor
> Autism's Parent Trap
> Sign In to E-Mail This Print Save
>
> By CAMMIE McGOVERN

"To aim for full recovery — for the person
your child might have been without autism — is to enter a dangerous
emotional landscape. For three children, the disconnect between
parental
determination and limited progress may have been lethal."

Too bad they never FC'd.  Jeeze...life in the zoo.

Tom

> Published: June 5, 2006
> IN recent weeks, three stories have hit the news with grimly similar
> plotlines: parents accused of killing their autistic children.
>
> On April 12, in Hull, England, Alison Davies and her 12-year-old son,
> Ryan,
> fell to their deaths from a bridge over the River Humber, in an
> apparent
> murder-suicide. (A note was found in Ms. Davies's kitchen.) On May
> 14, in
> Albany, Ore., Christopher DeGroot, 19, was trapped inside a burning
> apartment. He died in a Portland hospital five days later, and his
> parents
> are charged with murder, accused of locking their son in the
> apartment
> alone. And on the same May Sunday, in Morton, Ill., Dr. Karen
> McCarron
> admitted to the police that she had, the day before, suffocated her
> 3-year-old daughter, Katherine, with a plastic garbage bag.
>
> Family and friends have come to the defense of two of the parents
> involved.
> "Ryan was the focus and the purpose of her life," Alison Davies's
> sister
> told The Sunday Times, calling the double bridge jump "an act of
> love."
>
> A friend of Dr. McCarron's � a fellow member of her local
> autism-support
> group � told a columnist for The Journal Star of Peoria, Ill., that
> Dr.
> McCarron had devoted her life to Katherine. "She never took a night
> off,"
> the friend said. "She read every book. She was trying so hard,
> pursuing
> every lead."
>
> Chilling words to any parent of a child with autism who remembers, as
> I do,
> reading every book, pursuing every lead and never taking a night off
> �
> because autism feels like a war you re-arm yourself nightly to wage.
> The
> comments suggest the parents may have been trying too hard. Perhaps
> they
> were frustrated that their efforts did not lead to greater
> improvement in
> their children. That would not be surprising, because dramatic
> improvement
> is what too many parents are led to expect.
>
> Clearly there is a message in the recent deaths about the urgent need
> to
> increase support for the rising number of families struggling with
> autism.
> Having an autistic child is estimated to cost a family $10,000 to
> $50,000 a
> year in out-of-pocket expenses for medical treatment, therapy and
> education.
> With 50 new diagnoses of autism in this country every day, support
> services
> are already too stretched to meet the need.
>
> But as much as I'd like to fault government policy, I suspect it is
> not
> entirely to blame. There's another issue that hits closer to home and
> is
> harder for most parents of autistic children to be candid about. When
> your
> child is initially diagnosed, you read the early bibles of hope: "Let
> Me
> Hear Your Voice," "Son-Rise" and other chronicles of total recovery
> from
> autism. Hope comes from a variety of treatments, but the message is
> the
> same: If you commit all your time, your money, your family's life,
> recovery
> is possible. And who wouldn't do almost anything � mortgage a home,
> abandon
> a career or move to be closer to doctors or schools � to enable an
> autistic
> child to lead a normal life?
>
>
> Now, as the mother of a 10-year-old, I will say what no parents who
> have
> just discovered their child is autistic want to hear, but should, at
> least
> from one person: I've never met a recovered child outside the pages
> of those
> old books. Not that it doesn't happen; I'm sure it does. But it's
> extraordinarily rare and it doesn't happen the way we once were led
> to
> believe.
>
>
> According to her friend, Dr. McCarron was in despair in recent weeks
> because
> Katherine's language had regressed markedly. Every parent of a child
> on the
> autism spectrum knows this feeling: I've done everything possible;
> why isn't
> he better? The answer is simple: Because this is the way autism
> works. There
> are roadblocks in the brain, mysterious and unmovable. In
> mythologizing
> recovery, I fear we've set an impossibly high bar that's left the
> parents of
> a half-million autistic children feeling like failures.
>
> I don't mean to sound pessimistic about the prospects for autistic
> children.
> On the contrary, I see greater optimism in delivering a more
> realistic
> message to families: Children are not cured, but they do get better.
> ***********
>
> ************And better can be remarkable. At 10, my son is a far cry
> from
> the toddler who melted down when the sand was the wrong texture for
> drizzling. These days he embraces adventure, rides his bike, and
> repeats any
> story he tells five or six times. I remember thinking maybe we'd
> laugh
> someday at the lengths we went to when we were teaching him language
> � the
> flashcards, the drills, the repetitions. Now he's 10 and talking at
> last in
> his own quirky ways, and we don't laugh about the drills (though we
> laugh
> about plenty of other things). Language is a victory. So is
> connection and
> purposeful play. So are the simpler things: a full night's sleep, a
> tantrum-free day.
>
> Parents working toward these goals will one day be surprised and
> delighted
> by their children's funny new obsessions, odd fixations, and
> tentative but
> extraordinary connections with other children. Being more realistic
> from the
> start might make it possible to enjoy the journey and to see it for
> what it
> is: helping a child who will always function differently to
> communicate
> better and feel less frustrated. To aim for full recovery � for the
> person
> your child might have been without autism � is to enter a dangerous
> emotional landscape. For three children, the disconnect between
> parental
> determination and limited progress may have been lethal.
>
> Cammie McGovern is the author of "Eye Contact," a novel.
>
>


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--- Judy Lynne <autismthoughts@...> wrote:

> Date: Sun, 16 Jul 2006 12:42:17 -0700 (PDT)
> From: Judy Lynne <autismthoughts@...>
> Subject: can you post this?
> To: autismlist-owner@yahoogroups.com
>
>   HI!
>   I saw your yahoo group and was wondering if you would post the
> following message for me -
>   I dont particularly want to join the group but want to get the info
> out there - thanks for your consideration, Judy
>
>   LAST CALL - I am finishing up the Autism: Heartfelt Thoughts from
> Fathers book and can still accept a few more Dads, step-Dads or
> "father-figures"  who have a child or children with
> autism/Aspergers/PDD who would be interested in participating in this
> book project.  (It is similar to the "Autism~Heartfelt Thoughts from
> Mother's" book www.autismthoughts.com)  Any dads interested, please
> email me for more info at AutismThoughts@... - Thanks, Judy
> Lynne
>   Author & Mother of 22-year-old daughter with autism
>
>
>
> ---------------------------------
> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.  Great
> rates starting at 1�/min.


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I'd like to know more about your son.  Some 7 yr old children cry because
they *feel* different, regardless of being autistic or not.  Many 7 yr. olds
wonder about differences, the things that make people different, and fear
being laughed at.  It's sort of a developmental milestone.    I'll agree
with Tom's nicely stated observations that most of the grief experienced by
our autistic (and other abled) kids is because of the "defective" message
they hear over and over.  Who's at fault for that?  Lots of us.  Let's stop
it.  Always have felt it important to understand that emotionally as well as
physically, autistic kids are going to reach more typical milestones.  It
just happens at different times and sometimes they're subtle.  So subtle
that because some are constantly focused on the "disability" or
"challenge" --- those milestones are missed.  And not celebrated.  And
that's horrible.  For child and parent.  We become so immersed in the medea
and " behaviroal autism expert's" well-encouraged pity party, that we forget
to remember LIFE.

Our 9 yr. old son was just "formally" diagnosed Asperger's or some type of
Autism Spectrum/DD.  Jury's still out.  8 yr. old son was dx'd "classic" or
"typical Kanner's type" autism by age 4.  He remains non-verbal, but not
without language.  It just comes out in other ways and other expressions.
Ben has yet to gain control of bowel and bladder function.  7 yr. old
daughter has other challenges such as speech impediment, dyspraxia,
dyslexias.  All 3 children have important sensory disturbances and we work
toward easing those areas so that they can focus in other ways.  I don't say
"You gag at the smell of warm cheese because you're autistic."  I say "You
gag at the smell of warm cheese, because to you it smells horrible.  Your
nose smells things in a different way than some people.  I gag at the smell
of XXXXX, because of how my nose senses that odor."  That type of thing.
When asked if they would want to be any different as "people" ... how they
think, feel, react to life .... none of the three would want to be anything
else or any other "way."

Most important was that we've been aware of their abilities and challenges
and focus on the abilities, working around the challenges.  I've been very
clear from the beginning with all three children that Autism runs a wide
range of abilities and just because someone says or writes "autistic" on
this day, doesn't make them any different than they have been on any other
day.  It's a label and it serves two purposes, neither of which should
*have* to be necessary:   1.  To appease the health insurers when services
are needed. and 2.  To assist the school system in planning services.
*disclaimer*:  This is only Tink's opinion and should in no way be construed
as expert or sane writing.  ;o)

Again, it would be great to know more about your son, Ronda, and understand
where he's having the hard time.  Maybe we can offer some concrete
suggestions to boost his self-esteem/self-image!

Our Best,
Tink and Children (Orion, Ben, Sarah)

-----Original Message-----
From: autismlist@yahoogroups.com [mailto:autismlist@yahoogroups.com]On
Behalf Of Tom Smith
Sent: Sunday, July 16, 2006 2:45 PM
To: autismlist@yahoogroups.com
Subject: Autismlist Inservice #1...RE: [Autismlist] Re: [AutDads] Fw:
Neuroscientist So Close To Autism Breakthrough He's Helping Fund
Research





--- Ronda Feeney <rondaf@...> wrote:

> I�m new to this list and have got a lot to learn about Autism

I appreciate you coming here to learn.  I have worked diligently in
autism and related fields for 35 years.  I hope I can help.

> but I
> would
> welcome a cure for my 7 year old, he spends days crying because he
> knows he
> is different

...And because he's reminded of it every second of the day, often in
dramatic and tragic ways by most everyone around him.   Can you imagine
how that feels?  When I was that age I had a bed wetting problem which
I thought was permanent and would cause me never to be able to marry
and have children.  Oddly I didn't care about any other functional part
of my existence though that was also in question.  My mother didn't
make a big deal of it and if she had that would have been the worse
part of the whole thing.

> but cant figure out why.

YOU can't figure out why.  He may very well know the situation better
than you can imagine.


> It breaks my heart to watch
> his
> struggle with reading and writing when the other kids are doing so
> much
> more.

It breaks his heart you feeling that way and being upset over it.

> I can�t see he is better off the way he is.

Are you better off the way you are?  He's who he is and you are who you
are.  The problem is of mutual appreciation which granted is affected
by his communication problem, but that's all. Thanks to FC for some of
us here and just the good nature of some others, we were able to
overcome the communication problem and in the process learn that people
with severe autism are just the opposite of how they appear.  They are
in fact very intelligent, knowledgeable and aware.   Their condition
also gives them special abilities that benefit all of us.


If autism was cured, which in fact means eliminated, the absence of
them and their special abilites would doom all of us.  God put us all
here for a reason.  The challenge of autism is the critical challenge
of humanity.  It's all about love.  Autism is so difficult for many of
us because love is so difficult for all of us.  Love is THE winner
every time.

That may sound hyperbolic or over the top, but so is autism relative to
the human condition.  That can be a good thing like we think or a bad
thing like the curebies think.  The FACT is no one knows collectively
for sure and for that reason any talk of cure is at least unethical and
at worse dangerously fascistic.

Twenty years ago no advocates, or even parents in my experience, would
dare talk the way your talking now, publically at least.  The past ten
years it has become not only accepted, but the camp in autism who
beleives like this has run rough shod over the rest of us and
consistently get their way.  It's been the most damaging movement in
the hisory of autism and if they keep getting their way it not only
continues the damage to autistics, but some of us believe has dire
consequences for all of us.

Let's give people with autism the benefit of a doubt.  The rest of us
get it.  It's only fair and just.

Now, that was lesson number one on the autismlist's inservice on
autism.    More to come.  Please stay around and I hope it helps you
and many others.  I saw what happenned in autism the past thirty years.
  I had no ax to grind but was just a witness.  Being a lowly worker has
it's advantages.  The camps in autism might as well have been on Venus
for all I was concerned, but I couldn't help conclude as the years wore
on that the positive approaches people, though sinners like the rest of
us and maybe worse, were right about how to approach autism.  Maybe
them being right was part of a necessary redemption.  In any case,
let's not any of us make a big deal out of being right or wrong.  The
auties wouldn't like that.  They run entirely on love.

Tom


--- Ronda Feeney <rondaf@...> wrote:

> I�m new to this list and have got a lot to learn about Autism but I
> would
> welcome a cure for my 7 year old, he spends days crying because he
> knows he
> is different

...And because he's reminded of it every second of the day, often in
dramatic and tragic ways by most everyone around him.   Can you imagine
how that feels?  When I was that age I had a bed wetting problem which
I thought was permanent and would cause me never to be able to marry
and have children.  Oddly I didn't care about any other functional part
of my existence though that was also in question.  My mother didn't
make a big deal of it and if she had that would have been the worse
part of the whole thing.

> but cant figure out why.

YOU can't figure out why.  He may very well know the situation better
than you can imagine.



> Ronda Feeney
> rondaf@...
>
> -----Original Message-----
> From: autismlist@yahoogroups.com
> [mailto:autismlist@yahoogroups.com]On
> Behalf Of Tom Smith
> Sent: Sunday, 16 July 2006 9:18 AM
> To: AutDads@yahoogroups.com; autismlist@yahoogroups.com
> Subject: [Autismlist] Re: [AutDads] Fw: Neuroscientist So Close To
> Autism
> Breakthrough He's Helping Fund Research
>
> What an idiot. He wants to fix something that apparently is better.
> Go figure.
>
> Wouldn't it be better to find a way to get at this greater
> potentiality?
>
> This sort of thing is a pattern. Scientists see the brain differences
> in autism which could more easily be interpreted as superior than
> something causing retardation, but then they look at the subjects and
> it doesn't jive. So they interpret it the way they see the subject,
> thereby totally negating their scientific approach.
>
> Tom
>
> --- Mark Knox < mknox@... <mailto:mknox%40epix.net> > wrote:
>
> > Certainly not the first time we've heard of a pending "cure" but
> hope
> > for progress nonetheless.
> > Mark
> > ----- Original Message -----
> > From: AutismLink
> > To: mknox@... <mailto:mknox%40epix.net>
> > Sent: Saturday, July 15, 2006 1:14 AM
> > Subject: Neuroscientist So Close To Autism Breakthrough He's
> Helping
> > Fund Research
> >
> >
> >
> >
> > Brought to you by AutismLink
> >
> ----------------------------------------------------------
> > UofL Neuroscientist So Close To Autism Breakthrough He's Helping
> > Fund Research
> >
> > July 14, 2006 11:48 AM
> > http://www.wave3.com/Global/story.asp?S=5146301&nav=menu31_3
> <http://www.wave3.com/Global/story.asp?S=5146301&nav=menu31_3>
> >
> >
> >
> >
> >
> >
> >
> > By Lori Lyle
> >
> > (LOUISVILLE) -- New findings could mean an incredible treatment for
> > people with autism -- so incredible that a researcher at the
> > University of Louisville is digging into his own pockets to make it
> > happen as quickly as possible. WAVE 3 Medical Reporter Lori Lyle
> has
> > more in this exclusive report.
> >
> > Dr. Manuel Casanova, a neuroscientist at the University of
> > Louisville, is passionate about his research. His most recent
> > published study finds drastic differences in the brains of autistic
> > individuals. And now, with this knowledge, he's eager to move to
> the
> > next step: treatment.
> >
> > The breakthrough discovery is the result of a 3-year study
> involving
> > top scientists around the world.
> >
> > Dr. Casanova's team at the University of Louisville was responsible
> > for conducting the study that analyzed tissue from 12 brains -- six
> > of them taken from people with autism.
> >
> > He says the results are unquestionable, and explain symptoms
> > exhibited from autistic patients, such as trouble speaking.
> >
> > "It means that we have uncovered something very important, because
> it
> > has explanatory powers," Casanova says.
> >
> > The brain strands or minicolumns of autism patients have more
> cells,
> > but they are narrower and more densely packed -- which can limit
> the
> > brain's ability to send messages.
> >
> > Dr. Casanova says that's because "there's not enough juice to
> > actually power very long connections in the brain."
> >
> > Examining tissues from a normal brain and the brain of an autistic
> > person, Dr. Casanova explains the differences. "The more bluish
> > staining actually means more cells present," he says.
> >
> > More cells and smaller cells, making up tiny brain strands, or
> > minicolumns. These minicolums take in information, process it and
> > respond to it.
> >
> > But the increased amount of cells works to increase other abilities
> > -- like mathematics.
> >
> > Armed with this knowledge, Dr. Casanova is ready to begin working
> on
> > wiping out autism entirely. "Knowing the pathology, what is wrong
> > with the brains of autistic individuals, opens the door to
> potential
> > strategies that may actually even lead to a cure."
> >
> > Dr. Casanova's first step: developing a brain stimulator to bulk-up
> > the brain strands. And he feels so strongly about the potential
> that
> > he's ready to pay for it with his own money. "I approached the
> > university, told them I needed equipment for preliminary studies
> and
> > I would match the money with my own money."
> >
> > The cost for the equipment that could forever change the diagnosis
> of
> > autism: $40,000. Dr. Casanova is confident he's on the verge of a
> > major breakthrough. "Something good is about to happen," he said.
> >
> > Prevention is of course the main goal for a cure, and Dr. Casanova
> is
> > working on that, too. He says research findings so far point to
> both
> > genetics and the environment.
> >
> >
> >
> >
> >
> >
> >
> >
> >
> ----------------------------------------------------------
> >
> > Join our listserv! Don't get your news second hand! Get LINKED!
> > http://lists.autismlink.com/lists
> <http://lists.autismlink.com/lists>
> > If imitation is the highest form of flattery, we're flattered
> daily!
> >
> > To unsubscribe from this list visit this link
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Yahoo! Groups Links

Yes, it was a well done letter.  What was the alternative education
conference?  What can you share from it that might help others looking to
form an intentional autism community?  I still dream every day of this.
Lots of obstacles right now; but, I truly believe in my mind, heart, soul
... that we will succeed in the future.   My heart is heavy, too, with the
continued abuses of autistic and other DD people.  There was a man in
Spokane with what was termed "mental disability" (i think he may have been
MR)   He (last name was Zehm) was hogtied and suffocated by the police, who
denied wrongdoing.  A convenience store surveillance camera caught the whole
incident and it became apparent from the tape that the man had done nothing
wrong and was in a defensive posture when he was set upon by these 4 police
officers.   Beaten to the ground, hogtied, and then placed on his stomach.
He suffocated.  During the initial beating, he was said to be screaming and
fighting.  He was screaming and thrashing because he was so scared.  The
police chief assisted in covering up what really happened.  I tell you, I
have a number of family members who are police officers.  Despite that, and
I understand the whole Blue Brotherhood issue; but, I hope that these
"officers of the peace .ha." fry.  And fry deep.  I could only find a brief
follow-up from the Spokane Review and you had to pay for the archive
article; but, it serves AGAIN ... that instead of focusing on cures and such
... let's PLEASE ... focus on educating the ignorant; sponsor Dennis
Debauldt's group to give educational inservices to police, fire, rescue
personnel around the country on how to recognize and respond appropriately
to autistic people.  I could scream, too.  And I have cried a sea of tears
with each of these stories that come to light.  I'm afraid that more will
come to light; especially as the groups such as "Autism Speaks" by NBC gain
powerful footholds in the medea mind collective of "Disease, blight, stamp
out, cure."  NBC and this group are particularly heinous *because* of the
powerful media position they hold.  I can barely write about this still, as
I become unglued and rambling.  I'll leave it with this quote from C. S.
LEWIS:

We can rest contentedly in our sins and in our stupidities, and anyone who
has watched gluttons shoveling down the most exquisite foods as if they did
not know what they were eating will admit that we can ignore even pleasure.
But pain insists upon being attended to. God whispers to us in our
pleasures, speaks in our consciences, but shouts in our pains. It is his
megaphone to rouse a deaf world. ---------  C. S. Lewis

~*~ Tink

-----Original Message-----
From: autismlist@yahoogroups.com [mailto:autismlist@yahoogroups.com]On
Behalf Of autisticdreaming
Sent: Sunday, July 16, 2006 10:19 PM
To: autismlist@yahoogroups.com
Subject: [Autismlist] Re: Op-Ed Piece NY Times by parent of autie on
parents who kill


i think this hit right on target. i feel so happy for what we're
accomplishing here but when i read such disheartening news i get so
deflated. i wonder why? why? i guess we're lucky i know our motto
amongst many, we've never had many expectations being an all around
odd and strange family so we haven't suffered as much
dissapointments. i guess it's a lucky thing none of us ever talked
younger than three.

i've gone to the alternative education conference it was amazing..
i'm going to the cohousing conference where we'll learn how to
successfully form, how to fund and run an intentional community here
in floridaland...

we've already got a huge chunk of land already and already some
peoples are starting out buying trailers and moving up there. so i'm
back and forth mostly.  what can we do. just move on i guess. i still
wonder why? why? i guess i'll never fully understand. my kid has
autism shit and she's got rett syndrome too. it's awful. but as long
as she's happy i don't care that she needs assistance with 90 percent
of her daily functions. now she got so many people other than me
that's there for her. i know she'll always be okay. we have our
terrible times that pass into good times we just hang on for the ride
we don't know how to do anything else. we even buried some of our
children, whom we fought for more time but still slipped away.. we've
had to deal with autism, cerebral palsy, and more.. we've had to push
wheelchairs and change diapers well into the teens. but we still
lived life. how people can be so selfish to not see beyond their
situation, another father here in miami threw his sons out a hotel
window just to spite his wife. they weren't autistic but peoples
selfishness exceeds no bounds. people get crazy when things don't go
the way they want. like it must be this way or else they just snap.
people are so frightening sometimes. you never know who is going to
lose it.

but i liked this article alot. we need more of this about. i just
cried something awfull about the dad and his son.

crabtail


--- In autismlist@yahoogroups.com, "Tink" <tink.le@...> wrote:
>
> http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?
_r=1&oref=slogin
> New York Times:  Editorials
> Op-Ed Contributor
> Autism's Parent Trap
> Sign In to E-Mail This Print Save
>
> By CAMMIE McGOVERN
> Published: June 5, 2006
> IN recent weeks, three stories have hit the news with grimly similar
> plotlines: parents accused of killing their autistic children.
>
> On April 12, in Hull, England, Alison Davies and her 12-year-old
son, Ryan,
> fell to their deaths from a bridge over the River Humber, in an
apparent
> murder-suicide. (A note was found in Ms. Davies's kitchen.) On May
14, in
> Albany, Ore., Christopher DeGroot, 19, was trapped inside a burning
> apartment. He died in a Portland hospital five days later, and his
parents
> are charged with murder, accused of locking their son in the
apartment
> alone. And on the same May Sunday, in Morton, Ill., Dr. Karen
McCarron
> admitted to the police that she had, the day before, suffocated her
> 3-year-old daughter, Katherine, with a plastic garbage bag.
>
> Family and friends have come to the defense of two of the parents
involved.
> "Ryan was the focus and the purpose of her life," Alison Davies's
sister
> told The Sunday Times, calling the double bridge jump "an act of
love."
>
> A friend of Dr. McCarron's � a fellow member of her local autism-
support
> group � told a columnist for The Journal Star of Peoria, Ill., that
Dr.
> McCarron had devoted her life to Katherine. "She never took a night
off,"
> the friend said. "She read every book. She was trying so hard,
pursuing
> every lead."
>
> Chilling words to any parent of a child with autism who remembers,
as I do,
> reading every book, pursuing every lead and never taking a night
off �
> because autism feels like a war you re-arm yourself nightly to
wage. The
> comments suggest the parents may have been trying too hard. Perhaps
they
> were frustrated that their efforts did not lead to greater
improvement in
> their children. That would not be surprising, because dramatic
improvement
> is what too many parents are led to expect.
>
> Clearly there is a message in the recent deaths about the urgent
need to
> increase support for the rising number of families struggling with
autism.
> Having an autistic child is estimated to cost a family $10,000 to
$50,000 a
> year in out-of-pocket expenses for medical treatment, therapy and
education.
> With 50 new diagnoses of autism in this country every day, support
services
> are already too stretched to meet the need.
>
> But as much as I'd like to fault government policy, I suspect it is
not
> entirely to blame. There's another issue that hits closer to home
and is
> harder for most parents of autistic children to be candid about.
When your
> child is initially diagnosed, you read the early bibles of
hope: "Let Me
> Hear Your Voice," "Son-Rise" and other chronicles of total recovery
from
> autism. Hope comes from a variety of treatments, but the message is
the
> same: If you commit all your time, your money, your family's life,
recovery
> is possible. And who wouldn't do almost anything � mortgage a home,
abandon
> a career or move to be closer to doctors or schools � to enable an
autistic
> child to lead a normal life?
>
>
> Now, as the mother of a 10-year-old, I will say what no parents who
have
> just discovered their child is autistic want to hear, but should,
at least
> from one person: I've never met a recovered child outside the pages
of those
> old books. Not that it doesn't happen; I'm sure it does. But it's
> extraordinarily rare and it doesn't happen the way we once were led
to
> believe.
>
>
> According to her friend, Dr. McCarron was in despair in recent
weeks because
> Katherine's language had regressed markedly. Every parent of a
child on the
> autism spectrum knows this feeling: I've done everything possible;
why isn't
> he better? The answer is simple: Because this is the way autism
works. There
> are roadblocks in the brain, mysterious and unmovable. In
mythologizing
> recovery, I fear we've set an impossibly high bar that's left the
parents of
> a half-million autistic children feeling like failures.
>
> I don't mean to sound pessimistic about the prospects for autistic
children.
> On the contrary, I see greater optimism in delivering a more
realistic
> message to families: Children are not cured, but they do get better.
> ***********
>
> ************And better can be remarkable. At 10, my son is a far
cry from
> the toddler who melted down when the sand was the wrong texture for
> drizzling. These days he embraces adventure, rides his bike, and
repeats any
> story he tells five or six times. I remember thinking maybe we'd
laugh
> someday at the lengths we went to when we were teaching him
language � the
> flashcards, the drills, the repetitions. Now he's 10 and talking at
last in
> his own quirky ways, and we don't laugh about the drills (though we
laugh
> about plenty of other things). Language is a victory. So is
connection and
> purposeful play. So are the simpler things: a full night's sleep, a
> tantrum-free day.
>
> Parents working toward these goals will one day be surprised and
delighted
> by their children's funny new obsessions, odd fixations, and
tentative but
> extraordinary connections with other children. Being more realistic
from the
> start might make it possible to enjoy the journey and to see it for
what it
> is: helping a child who will always function differently to
communicate
> better and feel less frustrated. To aim for full recovery � for the
person
> your child might have been without autism � is to enter a dangerous
> emotional landscape. For three children, the disconnect between
parental
> determination and limited progress may have been lethal.
>
> Cammie McGovern is the author of "Eye Contact," a novel.
>









Yahoo! Groups Links

i think this hit right on target. i feel so happy for what we're
accomplishing here but when i read such disheartening news i get so
deflated. i wonder why? why? i guess we're lucky i know our motto
amongst many, we've never had many expectations being an all around
odd and strange family so we haven't suffered as much
dissapointments. i guess it's a lucky thing none of us ever talked
younger than three.

i've gone to the alternative education conference it was amazing..
i'm going to the cohousing conference where we'll learn how to
successfully form, how to fund and run an intentional community here
in floridaland...

we've already got a huge chunk of land already and already some
peoples are starting out buying trailers and moving up there. so i'm
back and forth mostly.  what can we do. just move on i guess. i still
wonder why? why? i guess i'll never fully understand. my kid has
autism shit and she's got rett syndrome too. it's awful. but as long
as she's happy i don't care that she needs assistance with 90 percent
of her daily functions. now she got so many people other than me
that's there for her. i know she'll always be okay. we have our
terrible times that pass into good times we just hang on for the ride
we don't know how to do anything else. we even buried some of our
children, whom we fought for more time but still slipped away.. we've
had to deal with autism, cerebral palsy, and more.. we've had to push
wheelchairs and change diapers well into the teens. but we still
lived life. how people can be so selfish to not see beyond their
situation, another father here in miami threw his sons out a hotel
window just to spite his wife. they weren't autistic but peoples
selfishness exceeds no bounds. people get crazy when things don't go
the way they want. like it must be this way or else they just snap.
people are so frightening sometimes. you never know who is going to
lose it.

but i liked this article alot. we need more of this about. i just
cried something awfull about the dad and his son.

crabtail


--- In autismlist@yahoogroups.com, "Tink" <tink.le@...> wrote:
>
> http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?
_r=1&oref=slogin
> New York Times:  Editorials
> Op-Ed Contributor
> Autism's Parent Trap
> Sign In to E-Mail This Print Save
>
> By CAMMIE McGOVERN
> Published: June 5, 2006
> IN recent weeks, three stories have hit the news with grimly similar
> plotlines: parents accused of killing their autistic children.
>
> On April 12, in Hull, England, Alison Davies and her 12-year-old
son, Ryan,
> fell to their deaths from a bridge over the River Humber, in an
apparent
> murder-suicide. (A note was found in Ms. Davies's kitchen.) On May
14, in
> Albany, Ore., Christopher DeGroot, 19, was trapped inside a burning
> apartment. He died in a Portland hospital five days later, and his
parents
> are charged with murder, accused of locking their son in the
apartment
> alone. And on the same May Sunday, in Morton, Ill., Dr. Karen
McCarron
> admitted to the police that she had, the day before, suffocated her
> 3-year-old daughter, Katherine, with a plastic garbage bag.
>
> Family and friends have come to the defense of two of the parents
involved.
> "Ryan was the focus and the purpose of her life," Alison Davies's
sister
> told The Sunday Times, calling the double bridge jump "an act of
love."
>
> A friend of Dr. McCarron's � a fellow member of her local autism-
support
> group � told a columnist for The Journal Star of Peoria, Ill., that
Dr.
> McCarron had devoted her life to Katherine. "She never took a night
off,"
> the friend said. "She read every book. She was trying so hard,
pursuing
> every lead."
>
> Chilling words to any parent of a child with autism who remembers,
as I do,
> reading every book, pursuing every lead and never taking a night
off �
> because autism feels like a war you re-arm yourself nightly to
wage. The
> comments suggest the parents may have been trying too hard. Perhaps
they
> were frustrated that their efforts did not lead to greater
improvement in
> their children. That would not be surprising, because dramatic
improvement
> is what too many parents are led to expect.
>
> Clearly there is a message in the recent deaths about the urgent
need to
> increase support for the rising number of families struggling with
autism.
> Having an autistic child is estimated to cost a family $10,000 to
$50,000 a
> year in out-of-pocket expenses for medical treatment, therapy and
education.
> With 50 new diagnoses of autism in this country every day, support
services
> are already too stretched to meet the need.
>
> But as much as I'd like to fault government policy, I suspect it is
not
> entirely to blame. There's another issue that hits closer to home
and is
> harder for most parents of autistic children to be candid about.
When your
> child is initially diagnosed, you read the early bibles of
hope: "Let Me
> Hear Your Voice," "Son-Rise" and other chronicles of total recovery
from
> autism. Hope comes from a variety of treatments, but the message is
the
> same: If you commit all your time, your money, your family's life,
recovery
> is possible. And who wouldn't do almost anything � mortgage a home,
abandon
> a career or move to be closer to doctors or schools � to enable an
autistic
> child to lead a normal life?
>
>
> Now, as the mother of a 10-year-old, I will say what no parents who
have
> just discovered their child is autistic want to hear, but should,
at least
> from one person: I've never met a recovered child outside the pages
of those
> old books. Not that it doesn't happen; I'm sure it does. But it's
> extraordinarily rare and it doesn't happen the way we once were led
to
> believe.
>
>
> According to her friend, Dr. McCarron was in despair in recent
weeks because
> Katherine's language had regressed markedly. Every parent of a
child on the
> autism spectrum knows this feeling: I've done everything possible;
why isn't
> he better? The answer is simple: Because this is the way autism
works. There
> are roadblocks in the brain, mysterious and unmovable. In
mythologizing
> recovery, I fear we've set an impossibly high bar that's left the
parents of
> a half-million autistic children feeling like failures.
>
> I don't mean to sound pessimistic about the prospects for autistic
children.
> On the contrary, I see greater optimism in delivering a more
realistic
> message to families: Children are not cured, but they do get better.
> ***********
>
> ************And better can be remarkable. At 10, my son is a far
cry from
> the toddler who melted down when the sand was the wrong texture for
> drizzling. These days he embraces adventure, rides his bike, and
repeats any
> story he tells five or six times. I remember thinking maybe we'd
laugh
> someday at the lengths we went to when we were teaching him
language � the
> flashcards, the drills, the repetitions. Now he's 10 and talking at
last in
> his own quirky ways, and we don't laugh about the drills (though we
laugh
> about plenty of other things). Language is a victory. So is
connection and
> purposeful play. So are the simpler things: a full night's sleep, a
> tantrum-free day.
>
> Parents working toward these goals will one day be surprised and
delighted
> by their children's funny new obsessions, odd fixations, and
tentative but
> extraordinary connections with other children. Being more realistic
from the
> start might make it possible to enjoy the journey and to see it for
what it
> is: helping a child who will always function differently to
communicate
> better and feel less frustrated. To aim for full recovery � for the
person
> your child might have been without autism � is to enter a dangerous
> emotional landscape. For three children, the disconnect between
parental
> determination and limited progress may have been lethal.
>
> Cammie McGovern is the author of "Eye Contact," a novel.
>