FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

CARE

* Mind the Gap – Explaining Death

* Sheriff Magazine: "Effective Resolution of Contacts with Autistic Individuals"

* Crews Scouring Area For Missing Utah Boy

* Florida Volunteers To Help Autistic Kids, Adults

EDUCATION

* Spirit of Ireland Prize for Father Who Built School

For Autistic Son

* Nassau Co., NY Autism Center Opening

* Parents Say School Appeals Process Hurts Students

* Connecticut Special Education Parents Mobilize

* An Aussie Voice For Parents Crying Out For Help

AWARENESS

* Karyn Seroussi on Today Show, April 5th

* April is National Autism Awareness Month

Mind the Gap – Explaining Death

The annual Easter egg hunt raises a difficult problem - how do I explain to my sons the meaning of death?

"When Jesus came alive again on Easter Day, was it in time for his egg hunt?" asked Jake. The question made me realise that I had never attempted to tell the Easter story to his older brothers. For George and Sam, Easter is simply a chocolate-fest - and, since Sam started his gluten- and casein-free diet, a muted one at that. After Eight eggs are all right, apparently, and so are little eggs called Whizzers.

The colours are reminiscent of the drab palette of the Camden Town painters - dingy mustard, weak cocoa, sticking-plaster pink - and, like all gf/cf products, they are ridiculously expensive, but they pass muster for egg hunts and for those nests made out of squashed-together Rice Krispies.

George has invited his friends to an egg hunt, so, if the weather's good, I'll have 10 autistic boys, plus Jake, charging round the garden. Sam, and Oliver, who is on the same diet, will have to be directed away from the more attractive treasures on to the trail of the dreary Whizzers. Autists aren't good at looking for things - they don't understand secrecy, because it involves taking on someone else's point of view - so the eggs will have to be prominently displayed. And if it rains... we'll cross that bridge when we come to it.

But eggs it is, and hot cross buns - consumed furtively, out of Sam's way - but resurrection won't come into it. Talking about death has always been a problem. I've spent 10 years persuading George and Sam to accept the finality of death. To tell them a story about someone who rose again seems an unnecessary complication.

The first death in George's experience was that of Oscar, my neighbour's pony. George was three at the time. He still talks about Oscar. Autists have excellent memories - indeed, I sometimes think that part of the trouble is that they don't know how to forget. Oscar was followed by Conan the cat, Darius the peacock, various hens, and a brisk succession of hamsters. The peacock was the one that hit Sam hardest. For years he beseeched me to bring him back. One afternoon, astonishingly, a white peacock stalked up our drive. Darius was blue.

Sam bellowed, "White Darius!" and called me to come and see - an extremely rare event. A characteristic of autism is the failure to draw other people's attention to things, manifested in autistic babies as the absence of the "shared point". Sam almost never wants to share experiences, but this was important. The white peacock was a neighbour's escapee. His name turned out to be Terence. "White Terence" is still one of the phrases Sam repeats to himself during his almost constant, incoherent private vocalising.

Five years ago my aunt died. She had been a kind and constant presence in the boys' lives. George was furious with me. "Get her out of the fox's tummy!" he ordered - he knew of no other method of dying. I explained, but he got muddled and, to this day, blames me for her disappearance - "Mummy, spit Great Aunt Hilary out!" I told the boys that though we couldn't see her any more, we could think about her and remember the nice things we did with her. "Remember orange jelly," intoned Sam. I think my aunt would have been pleased with that epitaph.

Now George is 12, and has decided that he wants to die. "I'll be inside a fox," he declares. "Don't find me, Mum." It is not pleasant to hear one's child wish for death, but I'm less troubled by it than I would be if the comment came from a normal child. I think - hope - that George simply sees death as a convenient way of avoiding the demands that are constantly put upon him - similar to pulling the duvet over one's head, but more effective.

Jake, weeping, will ask, "When you are dead, who will be my mummy?" Stories and videos have to be censored. I haven't dared read him the first Babar book yet, with its uncompromising early bereavement. But George and Sam never ask questions that go beyond the here and now. The action of the imagination that asks, "What will happen to me, to you, to everyone I know?" and which leads eventually to "What is life for?" will probably always be beyond them. Jake, at four, already finds huge interest and consolation in the Easter story. For George and Sam, it would be just another bewilderment in a bewildering world.

* * *

Sheriff Magazine: "Effective Resolution of Contacts with Autistic Individuals"

[This note comes to us from Forensic Autism Care advocate Dennis Debbaudt, thanks to the California Autism Society.]

The March-April 2002 issue of Sheriff Magazine features a re-edited article titled (by the editor) "Effective Resolution of Contacts with Autistic Individuals" that I co-wrote in 2000 with Dr. Darla Rothman--curriculum specialist for the State of Maryland Police & Correctional Training Commissions MPCTC).

The article originally appeared in the April 2001 edition of the FBI Law Enforcement Bulletin and is based on the first-ever curriculum, autism-specific curriculum developed by a law enforcement agency, "Why Law Enforcement Needs To Recognize Autism (MPCTC, 1999).

Sheriff Magazine is distributed to every county sheriff and chief of police in the U.S. and all should have it by now. If autism groups are reaching out to local law enforcement during NAAM, perhaps a mention of this timely article and a request that the sheriff, chief or their training officer review it, might be appropriate.

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Crews Scouring Area For Missing Utah Boy

Pleasant Grove police were searching for a missing autistic 5-year-old boy Tuesday night.

The boy, Zachary Furner went missing shortly after 5 p.m. He was last seen at 1171 E. 900 South.

Furner doesn't speak and is known to run from people when they call his name, according to information released by the police department through dispatchers Tuesday night.

Furner's parents also told searchers that Furner will occasionally hide in confined places or climb trees.

Furner was last seen wearing a sage green shirt, blue jeans and hiking boots.

K-9 units, search and rescue teams, off-duty officers and city workers were all called in to search for the boy as darkness fell on the suburban community north of Orem which abuts the Uinta National Forest. As many as 200 volunteers had joined the search.

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* * *

Florida Volunteers To Help Autistic Kids, Adults

Warren Pearce, 73, volunteers about 40 hours a week at Central Florida's only facility for critically autistic children and adults.

Pearce said he just does whatever needs to be done, but the folks at Threshold said he takes volunteerism to a whole new level, earning him the distinction of becoming a WESH NewsChannel 2 Hometown Hero.

Some rooms at Threshold have a lot of Pearce in them. He's convinced people to donate items needed by the center, including TVs, bookcases, cabinetry, computers, tables, chairs and toys.

Threshold offers residential and day-treatment programs for children and adults with autism and developmental disabilities. For many, it's what Pearce called "a house of last resort."

"If we weren't here, they would either be in prison or on the street fighting, or they might not survive because they do have health problems and can't communicate," Pearce said.

Pearce heard about Threshold and began volunteering full-time soon after. "I started at first just doing small things: painting, running errands -- and before long there weren't enough hours in the day," Pearce said.

Pearce said helping out there makes him forget his own aches and pains.

"You would be amazed at how much we can churn out of this 4-by-4 office," Pearce said.

Developmental Director Ellen Thomson said Pearce makes everyone feel better. "When he walks in, the rooms light up, and it's been a privilege, a real privilege, to work with him," Thomson said. Thomson said Pearce opened Threshold's thrift store. He spends hundreds of hours collecting things to sell.

"It's a lot of stuff in a very small space, but it does a lot of good," Pearce said.

Not only does the store raise money, it raises public awareness about Threshold and autism.

Pearce is also on the United Way speakers' bureau, to help educate even more people.

"How would you feel if you were able to do something really nice for somebody or make a difference in someone's life? You feel great," Pearce said.

Pearce's current project is finding money to build a pavilion by the playground, so the kids can be outside but stay out of the sun.

* * *

Spirit of Ireland Prize for Father Who Built School For Autistic Son

A man who built a school for autistic children in his back garden is the winner of this year's Spirit of Ireland Award announced in Dublin last night.

Colm Fulham remortgaged his Clontarf home to pay for the building of the school after finding there was no place for his own autistic seven-year-old son Oisin to receive an education.

"I am a very happy man, but this is only the start of the work which has to be done," he said. "It is only when autistic children get what they deserve in terms of adequate and appropriate education will I be completely satisfied," Mr Fulham said last night.

The 40-year-old electronics engineer and his wife Denise began the project in 1999 using a revolutionary US teaching technique called Applied Behavioural Analysis and has helped more than 100 families with autistic children since then. His nominator was Teresa Hearne from Co. Kilkenny who described Colm as a hero to many parents of children with autism and special needs.

In October 2000 he and three other families took a legal action to secure State funding for the school. Last month it resulted in the State agreeing as a part of a settlement to pay &euro215,000 to keep the school going until July. Negotiations are to take place with government officials on meeting the future needs of the families involved.

Last night presentation took place at the Berkeley Court Hotel in Dublin where Colm was handed the keys of a&euro15,000 Renault Clio by the Taoiseach Bertie Ahern.

Nominator Teresa Hearne received two tickets for a ten day holiday in Bali and Singapore for her part in the awards which involved 12 finalists. A host of celebrities were involved in last nights award ceremony. Among them were Irish internationals Shane Horgan, Denis Hickey and Brian O'Driscoll together with boxer Steve Collins and pop sensation Six who performed for the guests.

MC was 2FM's Ryan Tubridy and Breffni Clack of Today FM.

The Spirit of Ireland Awards are the brainchild of businessman David Ryan who chairs the two year old event.

* * *

Nassau Co., NY Autism Center Opening

The first facility in Nassau County designed to help meet the needs of autistic children, their families and school districts in Queens and Long Island officially opens today in Bethpage. The Center for Autism is in the Fay J. Linder Pavilion of North Shore-LIJ Health Systems on Hempstead Turnpike. The Center for Autism is in the Fay J. Linder Pavilion of North Shore-LIJ Health Systems on Hempstead Turnpike.

"With an estimated 9,000 cases of autism in Nassau, Suffolk and Queens counties alone, the Center for Autism has a critical mission to fulfill," said North Shore-LIJ CEO Michael Dowling.

"Through generous philanthropic and state support, North Shore-LIJ will be able to commit extensive medical resources to address this complex, often misunderstood disorder," he said.

The center has a staff of nine, including two physicians, a psychologist, a speech and language therapist, a social worker, a manager of clinical research and community outreach and an adviser on the development of consultation models for schools.

Besides offering development assessments of autistic people up to age 21 and information and support for their families, the center will help school districts develop programs for autistic children to move them ahead academically and socially, said Dr. Joel Bregman, the center's medical director.

"We will be lending our expertise to the districts, not just helping them design appropriate classroom settings and programs, but also training staff members and educating parents," he said.

The state spends more than $500 million a year on special-education programs, and autism disorders are the third-largest spending category, said Dianne Zager, founder and director of a C.W. Post master's level special-education program specializing in autism.

Zager will be a consultant to the center.

Autism is a developmental disability that begins in early childhood and results in impaired social interaction, communication and behavioral functioning, Bregman said.

Severity of the disorder varies, but autistic people have difficulty understanding relationships and emotions and sometimes display inappropriate behavior— extreme reactions to minor changes, unusual sensitivities to particular sounds, sights or textures, compulsive routines and repetitive movements.

Early diagnosis often can be difficult, but it is "extremely important to later functioning that it is made as early as possible so that effective treatment can be delivered," Bregman said.

* * *

Parents Say School Appeals Process Hurts Students

The system defends itself at the expense of children, critics charge

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While accountability has become a buzzword in public education, parents who have challenged school decisions affecting their children say it won't become a reality until the system drops its "us-versus-them" approach to complaints.

They say parents with grievances are too often turned away, or treated as troublesome and unreasonable.

Those who have persevered and taken complaints through all stages right up to the school board say they found a system intent on defending itself rather than caring for its students.

"It becomes a power thing," said Lesley Ansell-Shepherd, who fought Victoria school board in an effort to have her gifted son advance to the next grade where he would encounter more challenging work.

"No one is interested in the child."

Freida Lalji reached a similar conclusion after a battle in Coquitlam to win her severely disabled boy a guarantee that he would have the same special-education assistant throughout the year -- a privilege granted at that time to only five students in the district.

"The long and the short of it is they never looked at what my child needed," said Lalji, who won an offer of accommodation only after she took her complaint to The Vancouver Sun.

"They cared about the needs of adults [in their employ] but forgot who they were supposed to be serving."

Lawyer Jim Reynolds of Ratcliff and Co. in North Vancouver said the process lacks fairness because those who investigate complaints are all part of the same system.

While policies vary by district, the usual procedure is for complaints to be reviewed locally by principals and then, if the complainant persists, by the assistant superintendent and/or the superintendent.

The final step is under Section 11 of the B.C. School Act, which gives parents or students the right to appeal "a decision of an employee of the board" to the board if that decision significantly affects the education, health or safety of a student.

The board's decision is considered final, although complaints about process or law can be taken to the provincial ombudsman.

In 1999-2000, the ombudsman handled 193 public schools matters, although only 33 were settled at that level while many others were sent back to the school district for resolution.

Reynolds, who has represented parents in a Section 11 appeal to a board, said trustees are in a position of having to pass judgment on a decision made by one of their own. "It becomes an employer-employee issue rather than a student issue."

Before siding with a parent and overturning an employee's decision, trustees would have to consider the impact on the workplace, and the ramifications for senior managers who supported that decision in the process leading up to the appeal, he added.

Reynolds said the process for reviewing relatively inconsequential property assessments is superior to that for reviewing school decisions affecting children because the final appeal in the former involves an independent board.

What's needed is an independent authority to hear appeals and ensure the interests of students are paramount, critics argue.

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Connecticut Special Education Parents Mobilize

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Manuela Da Costa-Fernandes, Register Staff March 27, 2002MILFORD — As the parent of an autistic 13-year-old, Mike Selvaggi has steeped himself in special education law, acronyms, official red tape and meetings, all to put in place a suitable special education program for his son.Now, with seven years of navigating the system under his belt, Selvaggi wants to use his insight and experience to form a support group that will help other parents of special education students.

"I want to empower parents to make positive changes for the future, to participate in the special education process," he said. "I want to know what kind of problems Milford parents are having and what resources they need."

Selvaggi and Paul Albanese, also the parent of a special education student, have spent several weeks organizing. The group will meet at 7 p.m. Thursday in Room 139 at the Margaret Egan Center on Lenox Avenue.

Donald R. Civitello, the district's director of pupil personnel and special services, said there have been similar parent support groups in Milford before.

"It's what parents might feel a need for. We don't discourage them from meeting," he said.

State Department of Education figures for 2000-01 show that Milford, a district of 7,000 students, has 1,036 students, or14.2 percent, identified as in need of special education. Of these students, 387 or 37.4 percent, are identified as learning disabled.

While the district's total expenditure on special education in 1996-97 was $9.7 million for 1,164 students, the allocation is now $11.3 million a year, records show. Officials say Milford is part of a nationwide trend in which schools spend more on special education.

Selvaggi said the new support group would be a forum in which parents can brainstorm, and share ideas and information, about experiences tackling red tape surrounding special education laws and regulations.

During formal interactions with schools officials, which are called Planning Placement Team meetings and determine programs for a special education student, parents can feel they "lack support," Selvaggi said. Sometimes, parents can be at a disadvantage because they are not able to discuss in advance written reports that can determine a student's special education program or Individual Education Plan, he said.

"Parents have problems articulating about problems that exist" in special education programs, said Selvaggi.

"It's a very involved and complicated system."

Many parents feel trapped in a "pendulum" mentality of trying to understand complicated special education programs while wondering if district programs are in a child's best interest, he said.

Albanese said also he suffered from a sense of "frustration and dissatisfaction" trying to find a suitable program for his son, who has Attention Deficit Disorder with Hyperactivity. Through the group, he hopes parents who feel isolated will have an outlet to "share stories," he said.

"They are not alone. There are other people dealing with these experiences," he said.

* * *

An Aussie Voice For Parents Crying Out For Help

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Adelaide parents exhausted by the daily struggle for help with their disabled children have set up a national network to do their talking for them.

The Australian Association for Families of Children With Disability will lobby the Federal Government for changes to policies and programs.

Organisers also hope to have government representatives and support groups as part of their association.

Two northern Adelaide mothers attended a recent conference in Victoria where the network was set up.

Julie Fyfe, of Salisbury Park, said yesterday she was sick of fighting and begging with government agencies for help with her autistic son, Cameron, 10.

She said parents did not have access to enough respite care, nor were there enough trained carers for disabled children.

"Everything seems to be Band-Aid solutions," she said. "There's many families breaking down because there's not enough help."

While Cameron attended a special annexe of a mainstream school, she had had great difficulty in finding approved vacation care with skilled staff. "In a couple of years we're going to have a real struggle as to what to do with them in the holidays," she said.

Ms Fyfe's friend, Jennie Bickley, of Greenwith, said her son Keegan, 12, required constant care and was "like a toddler".

He was blind and suffered a global brain injury after he was found not breathing in his cot at 10 weeks' old.

Ms Bickley said she had funding for 250 hours of care a year, but there were not enough trained carers.

Going out on her own was "a mammoth task" requiring a co-ordination of carers.

Ms Fyfe said organisers of the new network wanted to know how many families needed help and what type of support was most important.

Families interested in joining the network can contact Salisbury Campus Child Care Centre on (08) 8281 5550 or e-mail scml@chariot.net.au

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Karyn Seroussi on Today Show, April 5th

"Through an extraordinary twist of Karmic intervention, " writes in Karyn, "I've been rescheduled on the Today Show (which had been 'indefinitely' postponed because of the war) on Tuesday, April 9th."

There will be 6.3 million people watching, she repots/. Rather than hawk her book, Unraveling the Mysteries of Autism, she plans to take the opportunity to make a few key points:

1. Early recognition of the symptoms of autism/autism awareness/prevalence

2. Importance of being aggressively proactive about one's child's health

3. Researching the safety of every medical intervention given to one's child

4. Explanation of dietary and other bio treatments in autism

5. Resources: NVIC website, GFCFDiet website, ARI, ...?

=Seroussi%2C%20Karyn/103-7352949-4233455 <- - address ends here. Anyone who buys her book will automatically get an additional free year's subscription to the FEAT Newsletter. –LS

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April is National Autism Awareness Month

THE POWER OF ONE! IDEA RALLY COMES TO WASH, DC

A FREE EVENT & OPEN TO THE GENERAL PUBLIC.

[From Unlocking Autism.]

Unlocking Autism, a national not-for-profit organization will be in Washington, DC again this year on Sunday, April 21, noon to 5 p. m., hosting the third annual The Power of ONE! IDEA Rally on Independence Mall between 3rd and 4th Sts. The rally is cosponsored and underwritten this year by Cure Autism Now, The Autism Society of America, The New Jersey Center for Outreach & Services for the Autism Community, The Autism Coalition for Research and Education, The Vaccine Injury Alliance, Youth Consultation

Services: Sawtelle Learning Centers, SAFE Minds and Medical Interventions in Autism.

The 2002 Power of ONE theme incorporates the primary focus of the Individuals with Disabilities Education Act (IDEA): to continue to increase the U.S. Federal Government's allocation to states so as to meet the 40 percent funding goal for special education programs.

In 1975, Congress passed the Education of the Handicapped Act that served as the precursor for the law known today as IDEA. The purpose of the law was to ensure that individuals with disabilities had access to free and appropriate education. The act set a goal for the federal government to provide states with 40 percent of the funding needed for these programs.

Today, just 18 of the 40 percent goal is federally funded. Educational programs for children with Autism remain poorly funded and under-developed even though autism statistics have skyrocketed from affecting one in 10,000 children in 1990 to one in 250 children in the year 2000.

Autism now claims more victims than Down Syndrome, childhood cancer and childhood diabetes combined. IDEA is up for reauthorization in 2002, and leaders of the autism community are joining together at the rally in Washington, D.C. on April 21 to bring public and legislative attention to their common cause. In 1997, with the reauthorization of IDEA, funding sadly had not passed eight percent.

Since that time, disability groups have joined forces to demand increases in funding.

This year's rally is intended to provide education and awareness of the issues so those children receive the services they deserve. IDEA is important to everyone in every community whether they have a disability or not. When the U.S. Government does not provide the necessary funding to school systems, states and counties are burdened with generating these required-by-federal law services. The result is that funds available to all students in the public education system are impacted. It is in everyone's best interest to see IDEA fully funded.

The April 21 rally kicks off the rally with performances by the band Jonasay, a quintet that spent much of 2001 touring with Hootie and the Blowfish. A Jonasay CD will be out in April. Their clean smooth music packs a punch that everyone is sure to enjoy.

The Emcees of the event this year will once again be Jeana Smith, vice president of Unlocking Autism and Jeff Sell and Lee Grossman, both of the Autism Society of America.

Representatives from over 15 different organizations will present a wide array educational topics on autism. Among the scheduled speakers are the following:

• Shelley H. Reynolds - President, Unlocking Autism • Nancy H. Cale - VicePresident, Unlocking Autism • Stephen Shore, Board Member, Unlocking Autism & Autism Society of America • United States Congressman Mike Doyle - Pennsylvania - 18th District • Laura Weinburg • Miss Brandi Peterson - Miss Omaha 2002 • Miss Sherri Grippo - Miss Jefferson County 2002

• Jonathan Shestack, President & Cofounder, Cure Autism Now • Kevin Murray, Founder, Autism Coalition for Research & Education • Sallie Bernard, Ph.D., SAFE Minds • Dr. Cathy Pratt, Ph.D., Director, Indiana Resource Center for Autism • Barbara Loe Fisher, President & Cofounder, National Vaccine Information Center • Cliff Shoemaker, J.D., Vaccine Injury Alliance

• Ray Gallup, President, Autism Autoimmunity Project • April Oakes, President & Founder, Casi's Quest • Andrew Baumann, New York Families of Autistic Children • James Ball, Ed. D.,Vice President, Autism Services, Youth Consultation Service • Bill Davis, UA Pennsylvania State Representative • Victoria Beck • Jennifer Lassiter, UA Virginia State Representative & President, N. Virginia ASA

• Lenny Schafer, Editor, FEAT Daily Newsletter • Jeff Bradstreet, M.D., FAAFP, International Child Resource Development Ctr.

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

FEAT is a tax-exempt non-profit corporation

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Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy

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