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September 2007


FASD no obstacle for German horse rider

By Dawn Gelhart

Sinja Gibson's accomplishments gives proof of what hard work and a loving family can accomplish. Iceberg readers may remember Sinja, a teenager with FASD, from the poem Sit and Watch written by her mother Ann Gibson, and published here four years ago. Many of you might also remember the tragic loss of her mother a year later. A few months ago Sinja's dad wrote me of Sinja's summer plans. Of course, I had to ask if they would be willing to write an article for Iceberg. Sinja's sister, Dawn Gelhart, took on the project so that you too may read about Sinja's triumph. Lastly, I have to add that I, too, believe Ann will be looking down on Sinja's race saying, "Wow, what a ride!"

-- Katy Jo Vasbinder, Iceberg board member

Riding for Germany, Sinja Gibson will compete in the equestrian events at the Special Olympics World Summer Games 2007 in Shanghai, China. Held October 2-11, 2007, more than 7,500 athletes will compete in 25 sports.

Hamburg 2004 and Berlin 2006: 2 exciting cities, 1 fantastic event, 1,000 emotions – THE SPECIAL OLYMPICS! Our sister Sinja had the great honour to participate as a rider in those competitions. Hamburg, when she was 15 years old, was her first meeting with the Special Olympics, and then two years later she was in Berlin. We were so excited and proud of her.

In Berlin, the big opening ceremony – with many V.I.P.’s, dance and music – was the appropriate start for the wonderful event. Hundreds of athletes from all parts of Germany, as well as other European countries, filled the hall one after the other. In the arena and in the audience you could see beaming, happy and proud faces. And then the big moment: The Olympic fire was carried into the hall. There was an enthusiastic cheer as it was lighted and the Olympic thought was expressed, "Let me win. But if I cannot win, let me be brave in the attempt."

Sinja and her family

Sinja and her family (Sinja is 4th from the right)

Sinja's participation at the games was an unbelievable success. In both Hamburg and Berlin she won Gold in all her disciplines; in addition, in Hamburg she had to ride out of concurrence as nobody was in her class, and in Berlin she even scored 9.0 points in dressage.

We watched as our Sinja, who could hardly read and write, stood there, with a gold medal around her neck and a #1 below her. We cannot fully explain how proud we were and how many tears of happiness we shed.

It was Sinja's 18th birthday during the Berlin games, and 2,000 people sang happy birthday to her at the ceremony. Afterwards, she even had to sign many autographs. Who could imagine this was real? At last she got the tribute she deserved for her achievements. Nobody asked what was wrong with her, nobody stared at her. Here she was Sinja, how she wanted to be, and it felt really good.

Of course, we were especially happy and proud because Sinja won in her competitions. But even if she had been in last place, the memories would be just as good because she had the chance to shine, make many friendships, and even to meet her first love at the Special Olympics. All over the place we could feel the atmosphere, and often those who hadn't won were just as happy as those who had. After the presentation of the medals everybody – disabled or not – waved their hands in the air and sang "We Will Win" with all their hearts. At the Special Olympics it doesn't matter whether you are physically or intellectually disabled, the only thing that counts is who you are and how much fun you have.

All that is left for us to say is that the Special Olympics will stay in our hearts forever, and we are very proud that Sinja was nominated for the German equestrian team participate at the 2007 World Summer Games in Shanghai. Most of her family will join her as she travels around halfway across the earth to compete with other riders.

We are so proud of Sinja. And we are sure that her Mum will watch over her from heaven and make sure those will be special games for special people from all over the world.

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Mothers speak out about Fetal Alcohol Spectrum Disorders

By Marceil Ten Eyck

The DVD Recovering Hope was created about three years ago by a team comprised of videographers and birth mothers of children impacted by Fetal Alcohol Spectrum Disorders. The project was sponsored by SAMHSA’S FASD Center for Excellence, and I think the film’s approach not only educates, but also illustrates both the public and personal evolution of attitudes toward mothers who drank during pregnancy.

I was afraid to announce that I was one of THOSE moms who drank while I was pregnant because of my shame and guilt, and the anger of others toward drinking moms made it much worse. But, I knew if I did not share my feelings and experiences, I would not be able to heal and be a positive parent.

Being approached to contribute to the Recovering Hope project revived so much of my emotional history. I thought back to the time when I was first in recovery and how challenging that was. Then later I had to face the fact that I had caused both my daughters, one diagnosed with full FAS, the other with FASD, to have irreparable organic brain damage.

Because of the guilt and shame I felt when I found out that drinking while I was pregnant had harmed my daughters (I had already been sober for ten years at the time), I believed it was not helpful to allow women in early recovery to face this horror. I thought it might cause a mom to relapse, or, at the very least, to make her recovery more difficult.

So, when asked to be part of a network of recovering birth moms and to work on this video, I had mixed feelings. Should this information be part of a woman’s early treatment and recovery? After accessing my 12-step program of recovery, and realizing that I was trying to control the uncontrollable, I began to understand how important it would be to a family’s recovery to have information about FASD, and to know how to find resources for help.

Being part of the development team for this DVD was amazing. Individually, the mothers had wonderful ideas, and, as a group shared experiences, we were able to respect each other and work as a well-oiled team. The director talked with each mom separately, asking each of us what we thought should be part of the video. Then, during the process of outlining the script, filming, editing and re-editing, we were included in conference calls that allowed us to make corrections and give fresh ideas as needed. Given that each of us is pretty talkative, it speaks much about his abilities that he was able to single out the important points. We were all thrilled with the finished product, as it included everything we had wanted.

Another important aspect of the video was that the director and his team came to our homes to film. This allowed them to meet us and see for themselves who we were as individuals and families, not just alcoholics. For example, they happened to be in town when JulieGelo was having a birthday party for one of her children impacted by FASD, so the support group parents and their children were there for the filming as well. When they came to our home, both my daughters were there. We invited them for lunch; they joined us, and got to know us as a family. This, I think, is reflected in the comfortable feel of the video.

Although there are families from all over the country represented in this video, it was exciting for us here in Washington state that many of our esteemed helpers and professionals are also a part of this video. With clarity and empathy, they give information about FASD, and how difficult it is to be a mom in recovery.

Has this video helped to diminish anger at addicted mothers who drink while they are pregnant? My brother, Tom Ten Eyck, teaches addiction classes at Lewis and Clark University in Portland, Oregon. He has been showing this video in some of his classes for a couple of years. He told me that many of the students react to the video with extreme anger….”How could any woman drink while she was pregnant when she knows she might harm her child?” Tom said that a lengthy discussion often follows, enabling the students in the class who are not addicted to begin to get an understanding of the power of addiction. He believes that the video has helped some students to get in touch with their anger, to verbalize it, and hopefully to begin to pass through the anger to understanding.

I believe this video/dvd is a valuable addition to the resources available about FASD, and it is the first available that focuses on how birthmothers can incorporate their recovery with positive parenting skills if their child has FASD.

To order free copies of the DVD, visit SAMHSA’s FASD Center Web site, the database for resources, journals and information about FASD.

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Alcohol and drug hotline extends beyond the phone line

By Ann Forbes

The Washington State Alcohol and Drug Hotline (ADHL) started as a bare-bones operation called the Alcohol Help Line 28 years ago, and has evolved considerably since.

Like many of the hotline’s original volunteers, I had done hours of volunteer, and later paid, phone work for Dial-a-Bottle, a program funded to answer calls from those wanting resources and treatment information for alcohol problems in King County, Washington.

When Dial-a-Bottle closed in February of 1979, I moved to the Fetal Alcohol Syndrome program at the University of Washington in Seattle to do phone work and training for their “5-Health Line.” Helping on the FAS line was a wonderful learning experience for me as a former health teacher and alcohol counselor. Though I left the FAS line after a few months to start the Alcohol Help Line, that experience has certainly had us incorporate a good deal of training around pregnancy and alcohol/drug usage so that our many volunteers can inform the appropriate callers.

When we started the Help Line in 1979, we had a card table, one phone line and no chairs, along with a dedicated board of directors and a cadre of trained volunteers from the Dial-a-Bottle program. Board members laugh now and talk about having to bring their own folding chairs so they could sit during meetings. Since our grant from the county was fairly small, we needed to prove our worth by our call volume. We took turns having the phones transferred to our homes at night, and then the first hiring we did was to retain night personnel.

In our 28 years of operation, we are proud that every caller has connected with a live person rather than automated help. We became a statewide resource with our 1-800-562-1240 number in 1982. In 1984, we added a generic line to maintain current information about support groups and meeting times. In 1986, the county ombudsman asked to include us on the jail’s speed dial to provide resource information to inmates. We did this for two years, and our number of callers increased by 30,000, clearly showing a need. But, since there was no funding for this service and the jail’s high call volume put an extreme burden on our phone volunteers and staff, we very sadly had to cut this service.

In 1998, ADHL assumed the Clearinghouse contract to mail free brochures, posters, videos, booklets and other printed drugs and alcohol information (in a variety of languages) to those who request it. The Clearinghouse distributes information at conferences, health fairs and trainings across the state of Washington, and the materials and a lending library are also available online at http://clearinghouse.adhl.org.

We now also offer an active Teen Line staffed by students from the local high schools. They are all trained about adolescent resources, and do some of their work via email as more teens find them on the Internet. For the past three years the teens have furnished weekend breakfasts for a teen shelter, preparing interesting breakfasts that are healthy and fun.

Lately ADHL has been involved with Spotlight on Recovery. This project aims to decrease the stigma of addiction, and provide opportunities for those in recovery to be more visible role models for others. Spotlight on Recovery also partnered with Fairfax Hospital and the Seattle Parks Department to establish a recovery garden in the White Center area of Seattle.

ADHL staff members are also heavily involved in outreach, joining many committees in the state to promote awareness, address counselor concerns and women’s issues, and assist with training and educational requirements. In the area of domestic violence, we offer a free group to shelters to teach women about addiction and alcoholism and allow them to seek counseling while in a safe environment. We bridged these two systems in 1994 and have had much success.

We have also had the privilege of working with so many dedicated volunteers since our conception – including one that for 16 years served as the Sunday afternoon phone worker. While ADHL asks each volunteer for a year’s commitment following 80 hours of training, we average a 3-year stint from the volunteers. We train in resources, crisis work, listening skills and support groups, and take them on treatment visits. Over the years, we have trained more than 850 volunteers, and many are now working throughout the state in a wide variety of roles.

With all this success, we continue to look forward, even as we look back. ADHL’s current Web initiative is “The Evolution of Chemical Dependency Treatment and Services in Washington State,” highlighting interviews and stories by early pioneers in substance abuse treatment. The completed project will include filmed interviews, timeframes and archived information mined from magazine articles and other resources. Many interviews will be posted to the site, including talks with Iceberg board members Marceil Ten Eyck and Dr. Ann Streissguth.

Looking at the progress of substance abuse awareness and treatment in our state – and within our organization – illustrates the commitment and intelligence so many individuals have brought to this issue. ADHL is pleased to have contributed to this progress.

Ann Forbes is the executive director of the Alcohol & Drug Hotline.

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A new service opens in Seattle to assess for FASD in adults and late adolescents

By Dr. Paul Connor, Ph.D.

For more than 11 years I have been involved in research at the University of Washington’s Fetal Alcohol and Drug Unit (FADU) in Seattle. I have served as project director, co-investigator and principal investigator on several research grants within our unit. I advanced up the faculty ladder to assistant professor in the UW’s Department of Psychiatry and Behavioral Sciences and was named the clinical director of FADU.

In 2006, Janet Huggins and I opened an adult neuropsychological assessment service at the University of Washington’s Outpatient Psychiatry Clinic, also featured in Iceberg (September 2006). The clinic was well received, we had many referrals and we were able to see many individuals with known or suspected FASD. We were happy with the services we provided and felt that we were making a valuable contribution. However, operating a clinic within the complex network of a university system turned out to be an extremely complicated procedure, and in the end it became too difficult to maintain. So, as 2006 drew to an end, we made the difficult decision to close the clinic.

At this same juncture in time, the grants that I had been working on were ending and I found myself looking for some new challenges. I knew I wanted to both continue working at the University of Washington and in the field of FASD, but also felt the need to branch out. With the closing of the assessment clinic and my belief that its services were still needed, I decided to continue my work through private practice. So, with the assistance of the chairman of my department at the UW, early this year I obtained approval to both work at the university and open a private practice providing adult neuropsychological assessments.

My practice is located in Des Moines, Washington, in an office I share with three other psychologists and a social worker. In my private practice I offer adults (16 years and over) a comprehensive neuropsychological evaluation designed to assess cognitive function, mental health status and adaptive behavior. I specialize in neuropsychological assessments for traumatic brain injury (TBI), memory impairment, stroke, dementia, cognitive deficits, learning disabilities, attention deficits and FASD.

How is my service unique? There are many very good diagnostic clinics around the country. They are very well equipped to assess and diagnose FASD in children and early adolescents; however, these clinics are often not as well equipped to assess late adolescents and adults. Thus, the former UW clinic and my current practice fill an important gap in the diagnosis of individuals with FASD. Many are not diagnosed as children and live much of their lives not knowing that the cognitive and behavioral difficulties they suffer from may be related to prenatal alcohol exposure.

As with the former UW clinic, the testing battery I use was developed based on the many years of research on FASD conducted at the University of Washington’s FADU. It measures intellectual functioning, academic achievement, learning and memory, motor coordination, attention and executive functioning. Additionally, I measure the person’s adaptive functioning and screen for mental health concerns. From this information, and information about prenatal alcohol exposure, I am able to make an informed diagnosis of Alcohol Related Neurodevelopmental Disorder (ARND), if appropriate, and make recommendations on services that may be beneficial including state Division of Developmental Disabilities (DDD), Supplemental Security Income (SSI), and the Division of Vocational Rehabilitation (DVR).

The testing usually involves two visits to my office. During the first visit, I do an interview with the person and their parent, caretaker or other loved one, and then do about four hours of individual testing. On the second visit, usually a couple of weeks later, we meet again to talk about the results and recommendations.

I can accept referrals from many sources including community providers, doctors or the justice system. Referrals can also come from parents and loved ones, and clients may also self-refer. Clients do not have to live locally, and I have received referrals from around the country to come to my offices and participate in this assessment. One benefit of the private practice is that the wait time between referral and the first visit can be very short. Although I do not bill insurance companies for the service, clients can seek reimbursement from their insurer directly.

For more information about these services, please contact me at 206-940-1106, download my brochure , or visit my Web site at www.connorneuropsychology.com.


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