Autism One Newsletter

[Guest guest]

February 3 , 2007

Dear Friends and Colleagues -

AUTISM IN THE NEWS

Finally, a Topic Too Hot For The View By Kirby

Daytime television has not been the same since Rosie O'Donnell took a pugnacious seat at the talkative table known as The View. Rosie has pumped more heat and energy into that show than a year's worth of colorful coffee-filled mugs.

Love her or loathe her, Rosie O'Donnell has shown the nerve to think out loud - a rare and valuable commodity in the overly scripted world of television.

She has injected the show with some Nielsen-loving controversy and ratcheted up revenues in the bargain.

So when I heard that Rosie and The View were doing a one-hour special on autism (airing Monday 1/29), I assumed the subject would be handled with the same feisty, fearless, take-no-prisoners aplomb as usual.

After all, autism and controversy are practically siblings. If ABC would let Rosie trash Trump, bash Bush and oppose Oprah, surely they would let her wade into the burning contretemps of why 1-in-166 American kids are struggling with autism today.

I was even more encouraged when a producer invited me to the show. They were asking several experts to sit in the audience, who might be called upon to answer questions. She couldn't guarantee that I would be called, but asked if I could be there " in case the question of causation comes up, " (My book was about mercury, vaccines and autism).

" Causation, " of course, is the autism question of the century. Why do we have so many sick kids? Is this all simply genetics? Then why is there so much more autism now? What changed, and what are we doing to find out?

You won't find out on Monday's program.

Instead, The View presented a respectful and sometimes teary portrait of families living with autistic children--their daily struggles and special needs. Read post.

An Autism Mother's View of THE VIEW By Barbara Fischkin

It was for Dan that I watched The View Monday morning, which devoted an entire hour program to autism.

As the show began, I imagined what it would have been like if Dan and some of his compadres were on as well. Yes, they would all react differently. But at least one of them would scream because the lights made too much " noise. " Another would run into the audience, perhaps out the door. Yet another would simply take off his clothes. And Dan? He'd probably dismantle a camera or two, his television career be damned.

So when Rosie began to bring out families and their kids with autism, one overriding thought ran though my head.

At least one of these kids, I said to myself, is going to make Danny DeVito look like a perfect angel.

But none of them did. They were, in fact, the best behaved autistic kids I have seen this side of a three-teachers-to-one-student-ratio-behavior-modification-geared classroom overflowing with gallons of Skiddles and other " rewards. "

" Rosie, " I said to the television set. " Did you glue those kids to their seats? "

She glared out, as she sometimes does. " Only kidding, Rosie, " I said.

To be honest, some of them looked like what we in the autism community call " pretty involved, " - a euphemism for the fact that they are, basically, screwed. None of them, though, were out there long enough to do anything really autistic. Read post.

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ONE MORE DAY LEFT! VOTE NOW - VOLVO FOR LIFE AWARDS

Two very deserving women from the autism community have been nominated for Volvo for Life Awards, Carolyn Gammicchia and Eileen . Voting ends February 4, so please take a moment to vote now for these very deserving advocates.

Carolyn Gammicchia

In 2002, Officer Gammicchia and her husband , also an officer, formed the organization, The Law Enforcement Awareness Network (L.E.A.N. On Us). The organization has developed materials, delivered trainings, and provided information and resources not only to first responders, but also to community members as well. For example, The “Appropriate Response –– Appropriate Preparedness” program has provided education and 50/50 partnerships, enabling first responder agencies to recognize those individuals who may in fact have mental illnesses and hidden disabilities, i.e., Autism, Epilepsy, Alzheimer’s Disorder, and Tourette Syndrome. With this knowledge, both parties can work together for the best outcomes within our communities.

Eileen

Eileen , a mother of five –– two whom are autistic (one recovering through a home program) –– has worked tirelessly in Delaware to improve chances for all children to overcome autism. Based upon her own experience with her autistic children, Eileen started a non-profit foundation, Heal Autism Now Delaware (The HAND Foundation) to help provide financial assistance and information to parents of autistic children. Through the HAND Foundation, these parents can gain assistance to educate their autistic children at innovative institutions that the state can rarely provide.

VOTE – Click here. For Carolyn click Michigan, check the box for Carolyn Gammicchia and click submit. For Eileen click Delaware, check the box for Eileen and click submit.

AUTISM ONE 2007 CONFERENCE

Wednesday, May 23 - Sunday, May 27, Westin O’Hare Hotel, Chicago, Illinois

We are delighted to be adding a second track for the inaugural pre-conference Law Day. Track 1 is primarily for legal professionals, while Track 2 is devoted to parents and IEPs.

Everything You Always Needed to Know About IEPs (Individualized Education Program).

8 am

Session 1: Overview IDEA (Individuals with Disabilities Education Improvement Act of

2004)

9 am

Session 2: Introduction to IEP Strategy

10 am

Session 3: Assessments and IEP Goals

11 am

Session 4: Panel Discussion - Overcoming Objections at IEP Meetings

1 pm

Session 5: The Big Ticket – ABA (Applied Behavior Analysis)

2 pm

Session 6: Creating a Framework for Educationally Necessary Services

3:30 pm

Session 7: Advanced Strategy -- Wrapping It All Up (case studies)

4:30 pm

Session 8: Breakout A & B

Hit the Deck Running: The First IEP - For the parents who haven't had an IEP yet and/or have a preschool-aged child

Switching Tracks: Revamping an Existing IEP - For the parents with an existing IEP and/or elementary-school-aged child or older.

AUTISM ONE RADIO Debuts and coming attractions

Debuting February 9 on Autism One Radio

Social Skill Building Basics: At Home, At School, At Play

With hosts: Laurie s, M.A. CCC-SLP, Co-Founder, Social Skill Builder, Inc. and

s, M.S. CCC-SLP, Co-Founder, Social Skill Builder, Inc.

www.SocialSkillBuilder.com

When a child has an Autism Spectrum Disorder, you know how hard he or she has to work to achieve academic success in school. But are they given a chance to practice social skills, which are also affected by ASD? Children with ASD often have great deal difficulty understanding social behaviors and interactions, and these skills are usually not taught directly in school. On the playground and other places at school, there are large amounts of unstructured time that leave them to “sink or swim” in a complex social environment. If they carry this into adulthood, it could lead to a downward spiral of anxiety, depression and worse. But, there is great hope for these children with the various methods and tools now available to teach social skill development. Social Skill Building Basics: At Home, At School, At Play will explore ways in which parents, educators and professionals can work with children with ASD so they can achieve social, as well as academic, success.

Debut Program: Social Skill Building: A Parent’s Perspective

The first program introduces listeners to the challenges presented to children with ASD due to their lack of social skills and explains the how lack of social skills affects life at school, home and play. Guest, Dodds the mother of a 12-year old son and 9-year old daughter who have social skill deficiencies, provides a first-hand perspective on the problem. They discuss how social skills that are usually naturally acquired need to be specially addressed in children with ASD and the various ways that parents can work with their children to build social skills.

Coming Up

Thursday, February 8, 4:00 pm - 5:00 ET

The Fabric of Autism: Weaving the Threads into a Cogent Theory

Hosts: Judith Bluestone and De Michele

Topic: “Socialization” The greatest stress of all, real-life examples and solutions shared by experts and parents

Guests: Anne Donnellan, PhD, Martha Leary, MA, CCC-SLP, Carol Lombardo and Priscilla Becker (parents)

Friday, February 9, 12:00 pm -1:00 ET

SPECIAL

Host: Ackerman

Topic: Follow up on the San Diego debate with Arthur & Kirby

Guests: Arthur and Kirby

Saturday, February 10: 3:00 pm - 3:30 ET

Françoise Ayzac: Synergies: qui TEDera?

4:00 pm - 4:20: Rob Sidell & Debra Sidell: Autism Global Week in Review-Weekend Edition

Sunday, February 11: 11:00 am - 11:30

Jack & Sytsema: Children of Destiny: Spiritual Strength and Hope for Families Struggling with Autism

Monday, February 12: 11:00 am -11:30

SPECIAL

& Sandy Waters: The Candy Store. Guest: Teri Steinberg, Community Partner with The Illinois Autism Training & Technical Assistance Project and founder/planner of the Cure Autism Now/Autism Speaks " Evening With The Stars. "

Tuesday, February 13:

SPECIAL NEWS REPORT

10:30 am - 11:00 ET: Teri Arranga: Autism: Help, Hope, and Healing. Guest: Rick Rollens. Topic: The California Autism Numbers

VALENTINE SPECIAL: 1:30 pm - 2:00

Chantal Sicile-Kira: The Real World of Autism with Chantal. Guests: & Jerry Newport - An Asperger Love Story.

9:00 pm - 9:30: M. Kennedy, Esq: The Advocate

Wednesday, February 14: 10:30 am - 11:00

Rob Sidell & Debra Sidell: Autism Global Week in Review

Thursday, February 15: 11:30 am - 12:00

Qiying Jiang, OMD: Chinese Medicine for Autism

1:00 pm - 1:30: Coyle, D.I. Hom: Discussions on Bioenergetic Therapies-A New Revolution in Healing

Friday, February 16: 12:00 pm - 12:30

Dr. Hosam Badr: The Autism Arabic Café (in Arabic)

2:00 pm - 2:30: Amy Lansky: There's Hope with Homeopathy. Topic : Dosing Part 2: Liquid and LM Dosing

8:00 pm - 8:30: Herskowitz: Embracing the Journey. Topic: Social/Pragmatic Skill Therapy for children with Autism-Part 1

Saturday, February 17: 1:00 pm - 1:30

Dr. Holmes: Adults on the Autism Spectrum Today!

2:00 pm - 2:30: Geri Brewster, RD, MPH, CDN: Healing the Whole Person, Healing Whole Families

4:00 pm - 4:20: Rob Sidell & Debra Sidell: Autism Global Week in Review-Weekend Edition

Thursday, March 8, 4:00 pm - 5:00 ET

The Fabric of Autism: Weaving the Threads into a Cogent Theory

Hosts: Judith Bluestone and De Michele

Topic: “INPUT” The critical developmental and behavioral impacts of nutritional, environmental, and energetic influences

Guests: ph Chilton Pearce and Suzanne and Geoffrey Singer (parents)

THE SEAS OF INSANITY

In the great mix of things, we want at least to hold the middle – to keep our children out of harm’s way – to avoid potentially dangerous medical practices, educational therapies and certain foods. In the great mix of things, another sharp danger can be much more threatening and immediate to our children.

Previously I knew on an abstract level, the tremendous need for education. Now I know on a much more visceral level the absolute necessity to train first responders.

This past September, in West Los Angeles, my 8-year-old stepson, Ian, and I were waiting in the car for Teri, Ian’s mom. It was a nice morning… until the police arrived.

To pass the time and keep Ian occupied, every 10 minutes or so I would take Ian for a short walk. Ian can be challenging at times. It may be from sensory overload, intestinal issues, or any number of things. Not that morning. Ian was enjoying himself. He was all smiles and extremely cooperative, holding my hand during walks, easily transitioning when entering and leaving the car.

We were sitting in the car eating a snack when a policeman knocked on my window and ordered me out. I was immediately searched and placed in handcuffs. The police had responded to a call of a “kidnapping” in progress.

In all, four patrol cars and a police helicopter responded, paradoxically, creating the very situation they were responding to, in sizeable force, protect against – possible harm to a child. In a perfect pre-Ivan Illich moment all the ingredients are in place and mixed – waiting for a spark to complete the transformation.

Here is the situation: The driver’s door is left open. The passenger-side door, where Ian is sitting, is left open (Ian is not buckled in). Ian is a runner, an escape artist, he will bolt. We are parked on a fairly busy street. The driver’s door is unprotected. The rear-passenger door is unprotected.

I explain my son has autism and ask that the car doors be closed. I explain Ian will run. The more I ask the more agitated the police become. I’m almost begging at this point. “Please close the car doors. Protect my son. He will run. He does not know what a policeman is. He will not obey you.”

I am told to stop talking and led away to sit in a police car. It takes almost twenty minutes for the investigation to end before I am released and allowed to return to my son and secure his safety.

Thankfully, Ian did not bolt out of the car and into traffic. For twenty minutes my son’s safety was placed in jeopardy because the police did not have the proper training to deal with the situation. From the dispatcher to the officers who arrived on the scene, wrongful assumptions resulted in a situation where my son could have being seriously hurt or killed.

Good News

Part of the good news is we were able to work with the West Los Angeles Police Department to ensure their officers received the necessary training. We are grateful for their commitment.

Unfortunately, in all likelihood, it will happen again. The next time might well give cause for even greater wrongful assumptions by the police. The next time Ian may be in the throes of a meltdown, or I may be holding him to keep him from danger. A passerby could well report a kidnapping and physical abuse in progress.

It often seems the surrounding seas of insanity which swirl around us make possible scenarios from the farcical to the tragic. When the only sane party present is the parent, the flashpoint between farcical and tragic diminishes dangerously.

The next time, Ian and I may be separated for hours. Hours in which a well-meaning, police-employed childcare worker gives Ian a peanut butter sandwich, resulting in an anaphylactic reaction, or milk and cookies, resulting in serious intestinal side effects.

Ian needs to be protected against the well-intentioned. The well-intentioned have not served our children well, which underscores the need for an identification system.

Yesterday I met with the Fullerton Police Department to discuss the idea of an identification card. They are going to issue me a card with my picture and Ian’s identifying me as Ian’s step-dad. The card will additionally list Ian’s medical condition, food allergies and behaviors, including meltdowns.

If I am stopped in Fullerton the police will have a record of who we are. If I am stopped in another city the police will be able to call the Fullerton Police Dispatcher who will have our record on file.

It is not perfect. It fails to address some of the issues that may arise when Ian is older. But for now I feel more secure that Ian’s safety is a bit more secure.

One bureaucracy at a time we will work to secure a normal life. Each agency with their own separate threads of control, each influenced by the other has positive impacts on the next. The tapestry of autism is mirrored in the tapestry of organizations we need to educate, as one-way conversations become two-way. Our children’s lives are not a spectacle of wailing sirens, they are a celebration.

If anyone would like more information about obtaining an identification card please feel free to contact me.

Please let me know if you have any questions, comments, suggestions, or ideas. Thank you.

My Best,

Ed Arranga

714.680.0792

http://AutismOne.org

earranga@...

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