Date:	Saturday, February 12, 2005
	Topic:	Environmental Toxicity & Issues What is important about Food, Air, Water and other issues as they relate to special needs children
	Presented by: Parent, Ron Petruccione
	Time:	TACA meeting, 1:00 pm- 4:00 pm
	Fee:	Free – no RSVP required
	Place:	VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa
		(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.) And remember, we are still a non-faith based group!
	Directions:	405 FWY South, Exit Bristol Right on Bristol Left on Baker Go under FREEWAY. The Vineyard Church is on the corner just after the freeway - turn left onto the freeway access road, make FIRST right into the Vineyard's parking lot.

TACA Has 7 Southern California Meeting Locations:
1.	Costa Mesa:	2nd Saturday of each month (info in item #1 for meeting topics and details)
2.	West Hills:	(the Valley, man) 1st Sunday of every month, 7-9 p.m. Location: Jumping Genius – 22750 Roscoe Blvd., West Hills (the corner of Roscoe Blvd. & Fallbrook Ave.) info: contact us
3.	San Diego:	4th Tuesday evening – 6:30- 8:00 p.m. - info: contact us ·         Feb. 22 ---Raun Kaufman -  Breakthrough Strategies for Autism Spectrum Disorders Note:  this talk will be given at the Costa Mesa & San Diego TACA locations only. Please see Costa Mesa section above for complete biography and details on this speaker. ·         Mar. 22-- Kathleen Edwards --Special Ed Law ·         April 26-- Charles Scott-- Special Needs Trusts ·         May 24-- Dr. Devin Houston -- Enzyme Protocol for Autism Spectrum Disorders
4.	Corona:	3rd Saturday – Time: 1:30–4:30 p.m. NEW LOCATION AS OF 2/1/2005: Autism Behavior Consultants 1880 Town & Country Road Building B-101  Norco, CA 92860. Located off the 15 Freeway (Take 2nd street or 6th street exit) off Hamner.  For more information, please contact us ·         February 19 - Speaker- Gene Hurwin from Big Fun Therapy & Recreational Services  ·         March 19 - Speaker- Lisa Ackerman, Executive Director, TACA, “Therapies that worked for my son” ·         April 16 -Speaker - To be determined ·         May 21 - Speakers- Jack & Christina Anthony, “Navigating your IEP" Christina-talking about her book, too!
5.	Torrance:	3rd Monday of each month at Whole Foods Market on PCH in Torrance Time: 6:30 - 9:00 p.m. For more info: contact us
6.	Visalia:	3rd Wednesday of month Time: 6 p.m. "Happy Hour" with GFCF snacks and coffee 6:30-8:30 p.m. Speaker Location: Kaweah Delta Multi-Service Center Auditorium, 402 W. Acequia, Visalia. Information: Please contact Lynne Arnold via email at Contact Lynne ·         February 16 - Tim Adams, Esq., of Huntington Beach, special education attorney IDEA re-authorization ·         March 16 - Speaker to be announced ·         April 20 - Mitchell Perlman, PhD, of San Diego, clinical forensic psychologist - Independent neuropsychological evaluations ·         May 18 - Monique Bekashus, MS, of Fresno , program director and behaviorist at Behavior Intervention Association - Behavior Intervention
7.	Santa Rosa:	(typically) 3rd Tuesday of each month at Swain Center 795 Farmers Lane, Suite 27, Santa Rosa 7:00 - 8:30 p.m.  For more info: Please contact us

Article A: Autism Treatment Network Announcements

The Autism Treatment Network Brings Together Leading Physicians
And Medical Centers to Improve Medical Treatment for Autism 

Strategic Alliance Formed With Cure Autism Now to Accelerate ATN’s Work

SEATTLE —Feb. 3, 2005 — Formation of the Autism Treatment Network (ATN), a national nonprofit organization designed to support collaboration to improve treatment for autism, was announced today. ATN is the nation’s first network of hospitals and physicians that aims to bridge gaps in knowledge and understanding and improve treatment for individuals with autism.

ATN includes physicians and healthcare practitioners from six leading medical centers that have come together to evaluate the medical conditions present in autism and provide best practices for their identification and treatment. ATN plans to create treatment guidelines that will be made broadly available to physicians, researchers, parents, policy makers and others dedicated to enhancing the medical care of individuals with autism. 

Autism is one of the fastest growing childhood disorders in the United States, affecting as many as 1 in 166 children (source: Centers for Disease Control and Prevention). However, treatment and access to treatment for children with autism remains inconsistent across the nation.

“Because of the dramatic rise in autism rates in the United States during the past decade, we have seen increased attention to research and education; however, treatment has not received the same focus and investment,” said Richard Fade, co-founder of ATN. “There are hundreds of thousands of children and families struggling with autism. They face a tremendous challenge as considerable gaps remain in understanding how best to treat this disorder. This is especially true with regard to medical issues. By establishing collaboration among leading hospitals, ATN will create a better standard of care for autism and help make that care broadly available.”

“ATN represents the start of a cooperative venture to study and create new treatments for autism,” said Dr. Margaret Bauman of Massachusetts General Hospital for Children. “It took focused leadership to bring together the many individual units studying children’s cancers 30 years ago and have them cooperate in studying new treatments. Today there are dramatic improvements in the survival of children with cancers. Many people and programs are doing important research on mechanisms of childhood autism — but so far none have developed a strong collaboration among centers focused on treating medical conditions in a similar way that revolutionized the care of childhood cancer.”

The Autism Treatment Network and Cure Autism Now Announce Strategic Alliance

Cure Autism Now, one of the leading funders of autism research in the United States, and ATN announced today they have entered into a strategic alliance to accelerate the work of ATN. The alliance will take advantage of the research capabilities and collaborative protocols that Cure Autism Now has developed over the past 10 years.

“Our achievements over the past 10 years prove that science can be accelerated,” said Peter Bell, CEO and executive director of Cure Autism Now. “Families want more access to treatments that work, and the ATN medical protocol will provide more effective treatment options,” continued Bell, who will sit on the ATN board. “With the establishment of evidence-based treatments, our families will one day have effective treatments available to them within driving distance of their homes.”

“Cure Autism Now is the voice that will connect the treatment approach that ATN develops with the needs of families and children with autism across the country,” said David Humphrey, co-founder of ATN. “The organization has a long and successful track record of leadership in funding research, education and political advocacy. It immediately understood the potential of the collaborative model and the value of our focus on treatment. Cure Autism Now has great knowledge and experience to apply to this effort in addition to its development support. We are very excited about Cure Autism Now’s help and partnership.”

Treatment Experts Form Network

ATN will include regional “centers of excellence,” where physicians will establish state-of-the-art care, conduct clinical research and mentor trainees. The initial treatment approach is based on a comprehensive model employed at Massachusetts General Hospital in Boston (MGH), one of the nation’s most respected programs. Other founding centers in the network include Baylor College of Medicine, Houston; Cleveland Clinic Foundation, Cleveland; Columbia University Medical Center, New York City; Oregon Health & Science University, Portland, Oregon; and the University of Washington Medical Center, Seattle.

ATN physicians and clinicians will work to establish common practice guidelines and a database to enable the team to better understand the nature and scope of health issues in autism. Physician conferences will be held to discuss treatment and outcomes related to various medical interventions for individuals on the autism spectrum. Ultimately, ATN hopes to produce treatment guidelines for autism based on credible research and rigorous clinical trials.

Collaborative Approach Supported by Government and Patient Advocacy Leaders

ATN’s mission and model have been well received and have earned the support of professionals, academic institutions, community and advocacy organizations in the field. “Research teams across the United States are focused on the critical work of discovering the underlying mechanisms resulting in autism; that work will be crucial in the future,” said Thomas R. Insel, M.D., director of the National Institute of Mental Health and chair of the federal government’s Interagency Autism Coordinating Committee. “Collaboration, as it is structured and supported through ATN’s model, should improve the quality of treatment and increase awareness of treatment options. We are enthusiastic about this collaborative effort, and we look forward to partnering with ATN to foster greater accessibility of new and better treatments developed through research.”

About Autism

Autism is a complex developmental disability that affects an individual in the areas of social interaction and communication. Autism is a spectrum disorder that affects each individual differently and to varying degrees of severity. Autism affects an estimated 1 in 166 births (source: Centers for Disease Control and Prevention, 2003). This means that as many as 1.5 million Americans today are believed to have some form of autism.

About the ATN

Founded in 2004, the Autism Treatment Network (ATN) is a nonprofit organization dedicated to filling the gap in medical care for individuals with autism. Inspired by the success of the Children’s Cancer Network and The Cystic Fibrosis Foundation, ATN’s goal is to create needed infrastructure so that physicians and researchers can share best practices and treatment protocols, and ultimately raise the quality and availability of proven autism treatments. The network includes the following centers: Baylor College of Medicine, Houston; Cleveland Clinic Foundation, Cleveland; Columbia University Medical Center, New York; Massachusetts General Hospital, Boston; Oregon Health & Science University, Portland, Oregon and the University of Washington Medical Center in Seattle. More information on the Autism Treatment Network is available at http://www.autismtreatmentnetwork.org.

About Cure Autism Now

Cure Autism Now is a nonprofit organization dedicated to promoting and funding autism research and accelerating the pace of scientific progress toward effective treatments and a cure for autism. The organization is one of the leading private funders of biological research in autism, providing more than $20 million for research grants, education, outreach and scientific resources, including the establishment and ongoing support of the Autism Genetic Resource Exchange (AGRE). Cure Autism Now has chapters in Los Angeles, Orange County and San Francisco, Calif., New Jersey, New York City, Chicago, Philadelphia, Houston, Seattle, Maryland/D.C. area, and Honolulu. For more information about Cure Autism Now, please visit http://www.cureautismnow.org.

Editors note: You heard about it first on AutismOne Radio – now look at the support grow!

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Article B: For Siblings of the Autistic, a Burdened Youth

http://www.nytimes.com/2004/12/10/health/10siblings.html?oref=login>
By JANE GROSS

RADELL, N.J. - When Mark Plage, 15, forgets to padlock the door of his bedroom, his 13-year-old autistic brother, Derek, barges in and leaves the place a shambles. When Mark tries to toss a football with Derek, the boy turns his back and walks away.
Mark's mother, by her own admission, used to scream at him for the smallest thing, unable to contain her frustration with Derek. Mark often wished she would come to his ice hockey games with his father. But Debi Plage had to stay home with her disabled son.
Mark recounts these experiences without reproach and with insight well beyond his years. When Derek "messes something up," Mark said, "I just fix it." As for his brother's inability to play, he said, "I know that it's not that he won't do it, but that he can't."
His mother's rages were "harder to deal with," Mark said, but "after a while I realized she wasn't really yelling at me."
He can even brush aside her occasional threats to leave home and never come back. "I knew in the back of my mind she'd never do it," Mark said. "She was just saying stuff because she was really upset." Siblings of children with any disability carry the burden of extra responsibility and worry for the future, though they are also enriched by early lessons in compassion and familial love. But autism, a brain disorder that affects communication and social interaction, is in a class by itself in the heavy toll it takes on siblings, according to educators, therapists and a dozen scientific studies.
With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance. Also, autistic children can be indifferent to loving overtures, which is painful to siblings, some of whom must literally show a brother or sister how to hug. Finally, some autistic children have raging tantrums, destroy the belongings of others and behave in peculiar ways, which can be frightening or embarrassing to siblings and create an environment of unpredictability similar to that in families with an alcoholic member.
"There's bound to be resentment when the emotional and financial resources are all wrapped up in one kid," said Don Meyer, director of the Sibling Support Project, run by ARC, formerly the Association for Retarded Citizens. "It's Johnny this, Johnny that, the United States of Johnny. Johnny is the sun in the family's solar system."
Much has changed since Mr. Meyer's first support group, in 1990, when most of the children in it had siblings with Down syndrome or cerebral palsy. Now, the siblings of autistic children dominate ARC's 160 sibling support groups nationwide. And groups just for siblings of autistic children are spreading.
The focus has changed partly because of the spike in diagnoses of autism, experts say. But it is also because of the recent acknowledgment of the impact on other children in the household, said Dr. Sandra L. Harris, founder of the Douglass Developmental Disabilities Center at Rutgers University , one of the nation's first schools for autistic children and a leader in research and programming for siblings.
Among Dr. Harris's innovations is formal training for siblings so they can engage an autistic brother or sister in play, using techniques widely considered the most effective in the classroom. Dr. Harris encourages parents to discipline autistic children, say, with a timeout, to make a statement about fairness to other children. She also urges families not to take togetherness to extremes. A normal child's school play or birthday celebration, for instance, need not be upstaged by the outburst of an autistic sibling, who might better be left at home. Dr. Harris has made the sibling groups a regular part of her school's curriculum. These groups generally include recreational and therapeutic activities, including art therapy, conversation guided by facilitators, the enticement of pizza or other children-friendly snacks and no parents listening.
The toll on the siblings of autistic children was painfully obvious at several recent support groups, at Jewish community centers in Scarsdale, N.Y., and on the Upper West Side of Manhattan. This reporter was allowed to observe two dozen children from the ages of 5 to 11, on the conditions that only first names be used for the participating children and that autistic siblings not be identified.
Alice, who is 11 and has a 6-year-old autistic brother, complained that "when you have a problem you don't get the attention you want." When her mother goes out to walk the dog, leaving Alice in charge, the girl said she was frightened that her brother would bolt from the house and "get lost, run over or die in the road." Lauren, 5, said that her 7-year-old sister could not talk and "so all she says is 'ugh, ugh, ugh.' " The group leader asked how that makes her feel. "Sad," Lauren whispered. Speech, occupational and behavioral therapists frequent the house, all focused on her sister.
"A lot of people have to work with her," Lauren said. "But one person left, so now there are less people, and I like that better."
Deborah, 9, grumbled about being tired all the time, because her 7-year-old autistic sister was often awake and noisy through the night. Deborah also said she wished she could argue with her sibling. "I'm the only one in the whole fourth grade who isn't allowed to have a fight," she said.
Jonah, 7, and Max, 10, commiserated that their autistic brothers, 10 and 8, sometimes waited too long to go to the bathroom and had accidents. Ryan, 8, described his brother going from cabana to cabana on a family vacation and eating other people's fruit. All three boys said they missed being able to talk about sports with their brothers.
Maggie, 10, complained about how uncompromising her younger brother could be. "It takes too much time" to draw him a picture, she said, "because it has to be perfect." And on the trampoline, he will play only one game, the Cow Jumped Over the Moon. "He lies down and makes me jump over him, over and over and over and over," she said.
Dr. Harris's research shows that children can engage autistic siblings in simple games, which improves the normal youngster's quality of life, even if the autistic sibling is largely indifferent. This technique is regularly used at the Alpine Learning Group in Paramus, N.J., where Jeffrey Parles, 11, taught his 14-year-old brother, Andrew, to play Nok Hockey and shoot baskets.
Jeffrey told his parents, Lisa and Craig Parles, that he wanted to play Uno, a card game that relies on matching colors and numbers, with Andrew, who is also mentally retarded, a common combination. So the boys' parents asked for help from Andrew's teachers, who guided Jeffrey through the first lesson one day recently.
Andrew, who barely speaks, was not at his best that day. But Jeffrey was determined and well versed in the basic techniques of behavior management. When Andrew's attention wandered, Jeffrey tapped his shoulder. With simple one-step instructions, the younger boy explained how to match cards.
Twice, eyes darting around the room, Andrew mistakenly paired a yellow 7 and a green 5. Each time Jeffrey re-established eye contact and gently corrected him. On the third try, Andrew got it. Jeffrey rewarded him with a whooping high five. "He'll do better the next time," Jeffrey said later.
The goal of teaching Andrew to play Uno was Jeffrey's pleasure. But that does not mean the younger boy is free of responsibilities unusual for his age. When the two brothers visit their grandparents, for example, Jeffrey is a translator. He is the one who can tell whether Andrew is trying to say "juice" or "cheese" and also can distinguish a "fake" cry, which is best ignored, from a real one that requires adult attention.
Dr. Bridget A. Taylor, one of the founders of Alpine, Andrew's school, said that younger siblings like Jeffrey "don't know anything different" and thus slide naturally into an adult role. They are also so attuned to their parents' stress and heartache, Dr. Taylor said, that they hide their own feelings and "walk around like everything is fine and dandy."
Even in support groups, children resist talking about life with an autistic sibling. Jen Clark, a group leader on the Upper West Side, said that when asked what was different about their own lives, they commonly answered "nothing" or "it's exactly the same." Ms. Clark, who also works as a private behavioral therapist, said some families were uneasy when their children complained about their autistic siblings.
One father, for instance, listened as his 10-year-old daughter begged for another sibling, without autism, so she could "see what it's like to have a normal life." The father, who said his daughter had ample opportunity to "process these feelings" in therapy and a support group, said he believed that many of her complaints were about the "routine struggles of being a sibling" and an "obsession with wanting attention."
Even when parents give them explicit permission to vent about an autistic sibling, many children choose silence, experts say, one of many ways they may try to protect their overburdened parents. An example is Amy Chiappiniello, 14, who has a 13-year-old brother, David, with severe autism. Amy's mother, Lori Chiappiniello, talks freely of the chaotic years when David destroyed furniture, left tooth marks on the mantel and broke windows. She encourages Amy to discuss that terrible time, but the girl says she does not remember.
Mrs. Chiappiniello sent Amy to karate lessons so she could protect herself if David tried to bite her or pull her hair, and to a therapist to discuss her unusual childhood. She encouraged Amy to seek peace and quiet, alone or with her friends, by staying with members of the extended family, who all live on the same street in Stratford, Conn. She even tells Amy that she "hates that David has autism" so her daughter knows she is not the only one who feels that way.
Still, Amy resists her mother's efforts to draw her out. "Is it hard sometimes?" Mrs. Chiappiniello asked. Amy replied dully, "Is what hard?" She became animated only when the conversation turned to people who tease or stare at her brother. "I give them an extra dirty look with a swear or two," Amy said.
Later, in an e-mail message, Amy was freer with her feelings. Therapy was a waste, she wrote, "because I realized they couldn't do anything so I just shut down."
"I keep it all to myself," Amy added. "But when I can't keep it in any more, I just sit in my room and cry for hours. If my parents catch me crying, I just say hormones kicked in and sometimes that's true."
Mark Plage, by his own account, feels less distress. Derek can certainly be annoying, but Mark is used to it and sees the silver lining. "He brings us together more, because we're in it as a family," Mark said.
Still, he is hyper-vigilant, more an auxiliary parent than a brother to Derek no matter how many times his parents tell him that it is not his job. One blustery evening, for instance, his mother was enjoying a cup of tea
when, upstairs, Derek's steady gait turned to jump-up-and-down pounding and his high-pitched singsong to a shriek. That usually means his brother is happy, Mark said, but you can never be too careful.

"I'm going up to check on him," he said.

TACA Editor’s note: This article touched me so much. I always have felt so much for the child affected by autism,  then the parents, and of course the rest of the family. This brings to light so much how siblings feel and their pain. I hugged my daughter and thanked her for being a rock star sister. And more importantly I told her that I would never minimize her tireless efforts and amazing love for her brother. Please share this article with family and have them recognize the family members that are so brave, helpful and amazing in how much they help their beloved brother or sister affected by autism.

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Article C: Budget update for the State of California and Special needs children

This is an email shared by Gary Monahan – Mayor of Costa Mesa - and correspondence with the Governor’s office regarding special education funding. Thanks to Gary for allowing me to share this with TACA Families.

Good afternoon, Gary:

Just a quick note to forward some information regarding the Governor's budget proposal and special education funding:

"Under State law and the federal Individuals with Disabilities Education Act (IDEA), individuals with exceptional needs are entitled to a free, appropriate public education. Students requiring special education are served either by local education agencies using State, federal, and local property tax funds or by the State Special Schools operated by the Department of Education. The Governor's Budget provides $172.7 million in additional General Fund for special education programs, including increases of $156.6 million for a 3.93 percent COLA, and $31.4 million for growth. The Governor's Budget also reflects a local property tax increase of $15.3 million and a total increase of $65.1 million in federal funds, of which $24.8 million is passed through to local education agencies (LEAs).

The 2005-06 fiscal year also marks the reauthorization of the IDEA. The reauthorization includes a commitment by the federal government to meet the full 40 percent funding level, originally promised at the inception of IDEA, by the year 2011. Among other changes, the reauthorization includes provisions to align IDEA with the NCLB, provides more flexibility and control for LEAs, and prohibits states from using increased federal funds to offset State-mandated funding obligations such as enrollment growth and COLA."

You can visit www.govbud.dof.ca.gov/homehtm for more detailed budget information.  Let me know when you'd like to come in and meet.

Best,

(a Legislative Aide)

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Article D: Study for ASD Children to commence in Arizona

Protocol for Study of Autistic Children Relationship of Urinary Neurotransmitter Levels and Amino  Acids to Gastrointestinal Function

Contact info:  Martha M. Grout, MD., MD(H) The Crossroads Clinic 18404 N. Tatum Blvd. Suite 207

Phoenix, Arizona 85032 - If interested please call 602-787-8500.

This IRB-approved* study is designed to determine whether there is a correlation between plasma amino acid levels and intestinal permeability, and if correlation is found, whether levels of specific amino acids might be predictive of response to amino acid supplementation.

The response of autistic children to amino acid supplementation is variable and seemingly unpredictable. Some do extremely well, and some become very agitated, with marked worsening of their autistic symptoms. Many autistic children have extremely poor intestinal function, with chronic yeast infection, dysbiosis, and “leaky gut” being very common.

What we are looking for in our study:

Subjects need to be available in Phoenix, Arizona for an initial evaluation. Parents are responsible for getting their child to and from the clinic and making it to all appointments. If coming from out of town, families are responsible for their own lodging, food and transportation. This study does not include any Neurodevelopmental protocols nor any other programs offered through Crossroads Clinic and their affiliates.

* Western Institutional Review Board

Protocol:

20-25 children with diagnosis of autism. No current amino acid therapies at the time of testing.

Symptom measurement tool:

• Autism Treatment Evaluation Checklist (ARI)
• Gilliam Autism Rating Scale (GARS)
• Sensory Profile

Specimens:    </