Fas arizona 2001 Conference Report

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“Looking Up the River”


FAS Arizona 2001 Conference Report

Sponsored by the FAS Community Resource Center,

Arizona Department of Developmental Disabilities, District II, and

Arizona Department of Health, Office of Women’s & Children’s Health



Who, When, Where


On November 8, 2001, Arizona held it's first statewide FAS conference in Tucson. Over 200 people from around the state attended. This was the first big step for the newly formed group called FAS Arizona.

Why


This conference was planned by FAS Community Resource Center to help educate key persons around the State of Arizona to raise awareness about issues surrounding Fetal Alcohol Syndrome disorders, the causes, the consequences, and potential solutions.

“River Babies”


There are many versions of the story that teaches the lesson of looking up the river. This is one:

One summer in the village, the people in the town gathered for a picnic. As they leisurely shared food and conversation, someone noticed a baby in the river, struggling and crying. The baby was going to drown! Someone rushed to save the baby. Then, they noticed another screaming baby in the river, and they pulled that baby out. Soon, more babies were seen drowning in the river, and the towns people were pulling them out as fast as they could. It took great effort, and they began to organize their activities in order to save the babies as they came down the river. As everyone else was busy in the rescue efforts to save the babies, two of the townspeople started to run away along the shore of the river.

"Where are you going?" shouted one of the rescuers. "We need you here to help us save these babies!"

"We are going upstream to stop whoever is throwing them in!"

This folk tale is told to help people in social service areas to look toward action to prevent the situations that bring about the need for services. This story can be applied to the FAS awareness movement. We are beginning to understand the magnitude of the problem presented by 50,000 children each year born in the United States with disabilities caused by prenatal alcohol exposure. Some of us are busy saving the babies born with FAS/ARND, while others are going up the river to stop drinking during pregnancy, or at least to try.

The goal of the first conference is to change the attitudes of people in leadership at different levels in the state, by presenting basic information but going beyond the obvious "heavy drinking during pregnancy causes FAS." We want people to "look up the river" beyond the obvious, to see that FAE is as serious a problem as FAS, that this disability is not easily recognized or understood, that the solution is not as simple as telling pregnant women not to drink. Finally, we want people to realize that many of the individuals who are drinking and having unprotected sex and subsequently bringing forth these children with FAS and FAE may in fact be alcohol affected themselves, hence the failure of many treatment programs for this population, not to mention the failure of treatment programs for those not affected. We want to provide as much quality information as possible to increase understanding of the depth of the problem, before blindly go forth seeking solutions for the FAS in Arizona.

Hopefully, key players will realize that one of the most important aspects of FAS prevention is the provision of services for those already affected, as they are believed to be the largest group that can be targeted for effective prevention of FAS, so the cycle of generational FAS can be broken. By looking up the river of FAS and related issues, we can better apply our efforts to the three levels of FAS prevention.

Opening Blessing


Delmar Boni, Apache Medicine Man, led all in song, prayer, dance, and whoops.

Conference Sponsors


  • FAS Community Resource Center

  • Fasstar Enterprises

  • Arizona Department of Developmental Disabilities, District II

  • Arizona Department of Health, Office of Women's & Children's Health

Key Players


  • Gail Harris, Ph.D.

  • Teresa Kellerman

  • Kathryn Butler

Key Presenters


  • Edward Riley, Ph.D., Neuropsychologist engaged in FAS brain studies at San Diego State University, Chair of the National Task Force on FAS

  • Panel of Family Experiences: Tawny Nelson, Ruth Wyatt, Suzy Lucier, John Kellerman, Andrew McMullen

  • Panel of Agency Representatives from: Arizona Department of Developmental Disabilities; The Arc; University of Arizona Genetics Clinic FAS Diagnostic Team; Arizona Early Intervention Program; Bureau of Indian Affairs; Sonora Behavioral Health; Tucson Residence Foundation; and Arizona Prevention Resource Center.

New Awareness


  • There is more to FAS than just physical characteristics

  • Most children with FAS disorders look "normal"

  • FAS is primarily an information processing disorder

  • Documentation of drinking during pregnancy is difficult to obtain
  • Even "light" drinking could cause problems in the developing baby's brain


  • ADHD is sometimes more than just ADHD

  • FAS = lost potential

  • Not all people with FAS have mental retardation

  • FAS interferes with an individual's ability to parent children

Arizona Dreams


  • Prevention program for all teens in Arizona schools

  • Prevention programs for pre-teens

  • Fewer children born with FAS disorders

  • Better intervention to reduce secondary disorders

  • Advocacy services for families raising children with FAS disorders

  • Pediatricians who are educated and involved in diagnosing FAS

  • Diagnosis PEA (Prenatal Exposure to Alcohol) will help identify the children who do not get a diagnosis of FAS

  • Community partnerships with all service provider agencies

  • Removal of cultural barriers around alcohol and FAS issues

  • Networks of support for parents and providers

  • Education that begins at home with healthy role models

  • Education through mass media about FAS

  • A new hit song about FAS that wins a monetary award to benefit FAS cause

  • De-glamorization of alcohol, to teach children the reality of alcohol as a drug that is dangerous and destructive

Obstacles to Overcome


  • Lack of funding for intervention services

  • Lack of insurance coverage for needed services

  • Time and energy constraints - burnout

  • Lack of support for families (birth and adoptive)

  • Lack of education and understanding among educators

  • Chaos in the classroom
  • Misunderstanding of FAS behavior


  • Inadequate treatment for mothers who might be alcohol affected

  • Unrealistic expectations of children and adults with FAS disorders

  • Denial on the part of drinking mothers, community personnel, medical professionals, government bureaucrats, and society in general. There is denial that FAS is a major health problem. There is denial that FAS without facial characteristics is still FAS. There is denial that anything other than alcoholic drinking is a problem. There is denial that responsibility for FAS lies with others besides the pregnant woman. There is denial that alcohol is a drug.

  • Inability to look up that river called denial

Comments

"The opening with Delmar was great. All the speakers gave us good information."

>>>>>>>>>>>>>>>>>>>>>>>>>>

"Great parent panel! I would like to hear more about families' personal experiences, successes and stories."

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"Excellent conference. The clinical info was beneficial, as well as the personal testimonies."

>>>>>>>>>>>>>>>>>>>>>>>>>>

Dr. Riley's presentation was good. I would like to hear more from him."

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"The family panel was extremely poignant and effective. Dr. Riley's presentation was very informative."

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"I would like to invite Teresa and John to speak to our Head Start program."

>>>>>>>>>>>>>>>>>>>>>>>>>>

"Dr. Riley is a superb speaker."

>>>>>>>>>>>>>>>>>>>>>>>>>>

"Great parent panel!"

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"I am in awe of Mr. McMullen's ability to share in his time of grief."

>>>>>>>>>>>>>>>>>>>>>>>>>>

"The family panel was informative. Johnny's thoughts on what it is like to have FAS were exceptional and informative."

>>>>>>>>>>>>>>>>>>>>>>>>>>

"You did an excellent job planning this workshop. I hope this becomes an annual conference."

>>>>>>>>>>>>>>>>>>>>>>>>>>

"Thank you. The presentations were excellent, especially those regarding the sexual issues that adolescents encounter."

>>>>>>>>>>>>>>>>>>>>>>>>>>

"What a fabulous conference. I was so delighted by the attendance. John was amazing! As you well know, no one in that room will ever be the same after hearing his presentation. The whole thing was a huge success."

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Learn more about FAS in Arizona here:


www.fasarizona.com

If you would like to become part of the solution for FAS Arizona to realize these dreams, we would like you to join our efforts in building a community partnership. We can also help educate your community or agency about FAS. For more information, Contact Gail Harris at (520) 577-0329 or Teresa Kellerman at (520) 296-9172 or email fasarizona@home.com





Speech by John Kellerman

(written with a little help from his Mom)



Hello! My name is John Kellerman. I live in Tucson, Arizona, and work at Desert Survivors, a nursery that specializes in plants that are native to Arizona. I live with my Mom, Teresa, and my dog, Winnie. I am 24 years old, and I have Fetal Alcohol Syndrome. This means that my birth mother drank alcohol when she was pregnant with me, and the alcohol messed up the way I developed.
Because of alcohol, I was born very small and am still short. I was born with a hole in my heart and I needed open heart surgery. My eyes were crossed and I needed surgery for that too. But the worst damage was what happened to my brain.
I am not as smart as other people my age. I like people, but I don’t have many friends, because I don’t know how to keep a relationship.
I like to be independent, but I have to be carefully watched by my Mom, or my brother, or my supervisor at work, because I can’t control my behavior all the time.

Because of the alcohol damage to the front of my brain, I don’t have good control of my impulses and I have poor judgment when it comes to making decisions, and making bad decisions gets me into a lot of trouble.

Because of damage to the center of my brain, I can’t plan ahead or solve problems very well, and I have a hard time remembering things like rules and consequences. I also have trouble with concepts like money and time. All this makes life very difficult for me.
I understand all about Fetal Alcohol Syndrome and I understand why my birth mother drank. I know she didn’t mean to hurt me with her drinking. I understand why I have problems with memory, emotions, behavior, impulses, and learning from consequences. What I would like is for YOU to understand all this as well.
My biggest problem is not my brain not working right. My biggest problem is people who don’t understand, people who think my problems are from not being disciplined enough or from poor parenting. My mom really has tried to teach me manners, what’s right and wrong, but it just doesn’t click all the time. I either can’t remember the social rules (like don’t stand too close, or ask first for a hug) or else I can’t stop the impulse to do what I want to do.
I get really frustrated with myself sometimes, and I feel bad when I make people uncomfortable or angry. I try hard and I want to make people happy, but my having FAS gets in the way of all that.
What makes FAS so hard to understand is that I have really good skills in some areas, like talking to people and understanding big words. I have learned how to “act” like an adult, but tests show that emotionally I am just a 6-year-old child inside.
I have lots of knowledge, but I don’t have enough common sense to use that information well. I have the body of a man but the impulse control of a child. This makes the world a very dangerous place for me. People can easily take advantage of me without my realizing it, and I can be led in the wrong direction by someone promising me their friendship or affection.

Do me a favor? Please ask every young woman you know to not drink during pregnancy. And please be forgiving if I am inappropriate. Remind me of what is right and wrong and I will try to remember. Show me healthy behavior and I will follow.
Thanks!
John Kellerman

November 8, 2001




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