Breaking The Silence FAQ Sheet | 2000


“BREAKING THE SILENCE”


“Power – the ability to
change circumstances – comes from inside. It’s giving a voice to something
that has no voice in order to affect a change. 

BREAKING THE SILENCE FAQ SHEET

WHO ARE YOU AND HOW DID YOU COME TOGETHER?
The list is a discussion group formed from a suggestion that came up in an e-mail list. Someone suggested that there is inadequate attention to
autism awareness (among other issues) and wondered how a group might go about
presenting their message in Washington in the context of a march or rally.
There was alot of discussion on the list about it for awhile, and so
a new list was formed. The mailing address for the discussion list is
BREAKING-THE-SILENCE@onelist.com
go to ONElist | Mailing List Communities and subscribe to Breaking the Silence.

WHAT IS THE PURPOSE OF THE LIST?


The plan is to hold a rally in Washington DC on April 8, 2000 . Several
dates were discussed and this date was chosen to avoid conflict with other
events, and to attempt to generate interest among the legislators while
Congress is in session. April is also Autism awareness month. The purpose of
the list is to bring together a grass-roots, parent-driven, child-centered
group of individuals who have an interest in bringing an awareness of Autism
to the nation.

This will be done by focusing on the larger scope of
problems…..the need for educational access, the need for increased funding
for research, etc. rather than focusing on the more individual needs…..such
as any particular medical intervention, or a particular philosophy of
educational programming. We must work together to achieve the broader, common
goals before individual families and persons can hope to find answers to their
more specific needs.

However, we also believe that it is important to “put a
face on autism” and to give the nation an opportunity to see the variety of
INDIVIDUALS affected by the SPECTRUM of autism.  

WHERE DO THINGS STAND RIGHT NOW?
As of January 1999, the following has been accomplished
A date for the rally has been set.  
A email discussion group at Onelist has been organized, as well as a chat
room. Mondays at
9 pm and Wed at 12 pm  
Yahoo! Clubs
breakingthesilence 
State representatives from each state are being sought. Many are in place.
If you would like to volunteer for this, contact Joanne at honeyb@ptw.com or Stephanie at a1a2ana3@aol.com for
details,
A list of participants in the discussion group, and their home addresses, etc.
has been obtained. (If you would like to add your information to the list,
please 
contact Joanne at honeyb@ptw.com
A meeting has been planned for any members who are able to attend personally.
It
will be held at the law offices of Jeff Sell in Houston, TX on May 18 th
Many many
details need to be resolved at this meeting, and many decisions will be
made.
A non-profit status is being arranged. The organization sponsoring the rally
has been
named: Autism Resource Konnection, or ARK. To many, the ark is a symbol
of hope and a brighter future. To others, it suggests the “spectrum” that is
autism.
Celebrities have been contacted about attending the rally as speakers. These
are
well-known individuals who have family members with autism. Likewise, some
physicians and other potential speakers will be contacted. We are awaiting
responses from them. 
Concerns about fund-raising have been addressed, and discussions have been
generated about how to fund the cost of things such as insurance, permits,
toileting facilities, any necessary honorariums or travel expenses for
speakers,etc. There has been some initial contact with corporate sponsors.
Discussions about the strategic and technical aspects of the rally are part
of the daily conversation on the list. If you have any contacts or
connections, let us know!!!!
State representatives have begun contacting local interested organizations,
such as
school districts, service agencies, care providers, etc. to begin the
process
of publicizing the rally. After the organizing meeting in May, we will work
on a online newsletter to email out to our local news stations, so they can
be kept up to date on our plans. State representatives will help to email
these out in their states.

HOW MUCH EMAIL AM I GOING TO GET FROM THIS LIST?
Many discussion groups generate a great deal of mail. This list can be
ordered in digest form, so that you get one email periodically, with a number
of posts included. The list generates about one digest per day, occasionally
with enough posts that it is necessary to download the posts as an attachment.
Hop right in and join us!

https://web.archive.org/web/19991008052832/http://members.aol.com/A1a2ana3/index5.html


What you can do to help


The most current estimate of children in the US with an Autism Spectrum Disorder is 1 in 500, or 400,000 children. Are parents more aware of the symptoms or are doctors more knowledgeable? Does it matter? These children are still ours, and they are the future of our country. Something needs to be done. There must be more research into the causes and treatments of autism. Research needs funding. We, as parents and families and friends of autistic children need to make our legislators aware of the problem at hand.  
Several projects and events are being planned on a very large scale, and this should be very beneficial since one loud shout is heard better than many small screams:
[IMAGE]

1. A letter-writing campaign to all of our representatives in our state capitols as well as in Washington will take place this April during Autism awareness month. We want our legislators to be inundated with stories, pictures and pleas to help grant support both to researchers and to schools. We also plan to ask them to introduce legislation forcing insurance companies to cover the extra medical and psychological needs of children with autism.
Here are a few ways to get address’ for those who work for “us”:
http://www.whitehouse.gov/WH/Mail/html/Mail_President.html
http://www.whitehouse.gov/WH/Mail/html/Mail_Vice_President.html

http://www.whitehouse.gov/WH/Mail/html/Mail_First_Lady.html
http://www.sourceguides.com/democracy/senate/index.html
http://www.sourceguides.com/democracy/house/index.html






[IMAGE]

BREAKING THE SILENCE

2. A rally is scheduled for April 8, 2000, in Washington DC, organized by the AUTISM RESOURCE KONNECTION (ARK). There will be a slide show, and many guest speakers who will inform the country about autism. For more information, contact: “Breaking the Silence” at http://www.ONEList.com or this web page. Breaking the Silence[IMAGE]
[IMAGE]

3. A photo tribute of all our kids entitled “Open Your Eyes” will be constructed by an organization called UNLOCKING AUTISM. They need pictures of all our kids, so they can assemble them and place the finished product alongside the slide presentation during the rally in 2000. Their goal is to remind us as parents that regardless of the treatments and therapies we choose for our children, regardless of our beliefs about the causes of autism in people in general or in our own child, the children are the ones for whom we ultimately fight. A registration form is attached if you would like your child included.








We need to make people aware of how widespread this problem has become. Please write letters to anyone and everyone…Senators, Representatives, Governors, Mayors, anyone who can help us to change local, state and federal laws to benefit our children. We need better research and more funding for it. Ask family members, friends, and coworkers to write letters to Washington. They know your children and how much potential they could have with the right treatments. Please make copies of this letter and pass it out to local agencies. Ask your school system to pass it out to parents. Mail it to friends across the country and ask them to pass it out to their local churches, synagogues, and civic organizations, asking their members to help in our letter-writing campaign. This should make a big impression.  
Send your pictures, mail your letters and we will see you in Washington in 2000. 

Here is a sample letter written by Jeff Sell. Feel free to change the wording to fit your needs and family.

Hon.,


I am the father of 4.5 year old twins, Benjamin and Joseph. They are autistic. We live in Houston, Texas and we drove over 450 miles to Harlingen, Texas for a secretin infusion since no local doctors were doing the procedure due to the fact that Secretin is not approved for the treatment of autism by the FDA. You may have seen a story about it on NBC’s Dateline back in October 1998. Secretin has been hailed by some as one of the most exciting developments in the field of autism research. However, it was not a miracle cure for this devastating neurobiological disorder that has affected my family, and, this letter is not soley about secretin.


I am a member of a large and very vocal group of parents, family members and friends of autistic individuals. We will be coming to Washington, D.C. on April 8, 2000. Simply put, we plan to BREAK-THE-SILENCE that has shrouded autism for far too long and we need your support. Every individual in this land has heard of AIDS, Muscular Dystrophy, etc.. . However, when I tell people that my twins are autistic, many haven’t a clue as to what I’m referring to; and some have even inquired as to “what types of painting or theater do they do?” Others simply say, “oh, like Rainman”. 


Very few know what autism is. Very few are concerned that the number of children diagnosed with this disorder has grown nearly tenfold over the past 15-20 years. Some erroneously believe that the autistic child’s mother must be the cause of the silence. Some mistakenly feel as if the child simply doesn’t feel like talking. Many think there is a cure–there is not. Many feel that there is a known cause to this disorder–there is not. There are, however, many unanswered questions that are posed every night of our lives to our maker; “WHY…?”


We will be doing our best to shine a beacon on autism during the next year and a half leading up to the march on our nation’s capital. Parents, friends and family members of autistic children and adults are looking for answers to many questions. Aggressive, scientifically-based research is the key to unlocking the box that our loved ones seemed to be locked up in. Help us BREAK-THE-SILENCE of autism when the time comes. 

In the meantime, please support legislation that provides the highest level of funding for ambitious research programs relating to this neurobiological disorder. We must set up a Registry to monitor children who have been infused for side effects, benefits and promptly make such information public. We must also obtain “COMPASSIONATE USE” status for secretin so that secretin will become easier to obtain and doctors who are willing to perform the relatively simple procedure can do so with protection. Lastly, we must obtain “FAST TRACK” status from the FDA relating to all aspects of secretin research.


Aggressive research programs are desperately needed if our children are to ever break out of the autism “box” in which they are trapped.


Thank you for your time.





Sincerley,


OPEN YOUR MOUTH

This part of the project is two fold. We would like to establish a network of
experienced parents and professionals that can guide newly diagnosed
children’s families to the support groups and professionals that treat autism
in their own areas. That way, if someone from Topeka, KS calls us we can call
the contact in Topeka and direct them to the parent for assistance in locating
programs, physicians and other parents in that area. Please indicate on the
above form if you are interested in participating in this project as well.

The second part of this project is to post current and pending legislation by
state on our website (which is very much still under-construction) at  
Unlocking Autism 
http://www.littleangels.org. This will allow parents to become more educated on the
laws regarding children with developmental disabilities. While we cannot
lobby for new laws as a nonprofit organization, we feel that it is necessary
for parents to be aware of established and pending legislation so that they
can determine if they would like to speak up. If you have any information
regarding laws in your own state that you would like us to post, please email
us at AidanEsq@aol.com.

This is our very first announcement of this organization and our national
projects and we sincerely hope that you will support us in our efforts. We
cannot thank you for the support that you have given us in the last 6 months
and simply want to return the favor. We would appreciate any assistance you
can provide in helping us spread the word about this organization and these
projects. If you can help with getting the press and other parents in your
area involved we would be grateful! We are in the process of contacting all
the major network news shows and talk shows with this information, and
anticipate a big push in April as it is Autism Awareness month.

Thank you for your time and your interest.

Sincerely,

Shelley Reynolds
Liam’s Mom


STARFISH

There was a writer who went out early every morning and walked the beach
before retiring to a small cottage to spend the rest of the day working on
manuscripts.
One morning as he was walking along, his bare feet in the sand, he looked down
the beach. In the distance he could see someone dancing along the waters edge
with a beautiful rhythmic movement. But as he got closer, he realized the
person was not dancing. He could see that she was stooping to pick something
up and then turning, running and tossing the object into the waves. As he
approached her, the man saw that she was picking up starfish on the beach and
throwing them into the sea.
She stopped for a moment as he asked her, “What are you doing?”
“The tide is going out, and these starfish stranded on the beach will die
unless I cast them back into the sea,” she responded.
“But there are miles of beach and thousands of starfish,” the man said. “You
can’t possibly make a difference.”
Without responding, she bent over, picked up another starfish and hurled it
into the ocean.
“I made a difference to that one,” she said.
The man stood silent for a moment, then bent down, picked up a starfish, and
joined the woman in her task.


I just wanted to share this. Let’s keep casting our stars.

https://web.archive.org/web/19991008061101/http://members.aol.com/A1a2ana3/index6.html


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