Newsletter
October 2003 |
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"Rabbits, wolves, eagles, deer and bears, oh my!" A report from family campThe first Washington state family summer camp to support children with Fetal Alcohol Spectrum Disorder (FASD) and their parents/caregivers and siblings was held at Camp Volasuca in Sultan, Washington August 28-31, 2003.
The camp was funded by the FAS Center for Excellence and coordinated in cooperation with the Washington State FAS Diagnostic and Prevention Network at the University of Washington. The goals of the camp were to provide parent training workshops and pampering, activities for children with FASD and their siblings, as well as family activities. The camp was modeled after the Stone Soup Group of Alaska, who have been running family summer camps for the past several years. Members of the Stone Soup Group also provided parent training on positive behavioral support and advocacy. Families participated together in activities such as nature walks, scrap booking, and miniature golf. They also had the chance to cool off in the camp swimming pool.
The children participated in small group activities as Bears, Wolves, Eagles, or Deer. Childcare was provided for our youngest group, the Rabbits. Children ranged in age from 2 weeks to 19 years of age. The camp activities included arts and crafts, field games, campfire activities, songs and skits. Our special events included a performance by a magician, carnival night with face painting, games and prizes, and a slumber party with a movie and popcorn. Parents were also able to take a break after their training sessions to make fleece blankets, receive a massage, network and relax while their children participated in the supervised camp activities with their counselors. According to the kids, parents, volunteers, and staff, camp was a great success! On the last day of camp, all of the participants were able to share their favorite things about camp in a talking circle. With all of the sunny skies and warm weather, according to the kids, swimming was definitely a hit, along with the magician, the counselors, and their favorite song "Herman the Worm"!
Parents appreciated the chance to talk with other parents. As one of the parents, Linda Duncan, said "One of the most impressive things about the weekend, and the most important to me, was the amount of supervision for my kids. There is no way I could have stayed in the trainings if I didn't think my kids were being carefully watched...After awhile I stopped watching the kids and could stay focused on the training." (To read more about Linda's Family Camp experience, see Still Euphoric after FAS Family Camp.) We had sunny skies and great weather for the outdoors and camping under the stars. We hope this will be the first of many camps in the future. Still euphoric after FAS Family CampBelow is a letter received from one of the parents who attended the FAS Family Camp with four of her children. I'm still feeling euphoric after FAS Family Camp! What an outstanding job you did pulling it all together. I've never been to a more organized and useful event. At first looking at the schedule I thought it was going to be stressful trying to have the kids to all their individual groups and me to where I was supposed to be, but it turned out to be no problem. We didn't feel rushed and the amount of together and apart time with the kids was really good. It felt very natural, kind of like the "dance of the toddler" in a new situation where they pull away from mom and discover new things but every so often they wander back over to check in and make sure she's still there. One of the most impressive things about the weekend, and the most important to me, was the amount of supervision for my kids. There is no way I could have stayed in the trainings if I didn't think my kids were being carefully watched. Once in awhile during the trainings, I could see out the window a child pull away from a group. I would be poised to jump up and go after them, but every time, before I could even get out of my chair, there would be one or two adults intercepting the stray child and gently guiding them back to their team. After awhile I stopped watching the kids and could stay focused on the training. I'm sure the Camp Counseling Staff was the most expensive part of your budget, but it was well worth it. I can give you so many examples of how good the weekend was for me, the trainings, the pampering, the social aspect, the support aspect, but I'd like to share a few examples of how outstanding this was for my kids. The first day when the Deer were scheduled to go swimming, I looked out the window to see all the Deer in the pool, but my Jonathan was standing still fully dressed at the edge of the pool. At our break I went over to check in with him to see why he wasn't with his group. He told me he just wanted to watch. Later that day I was checking on my kids in their groups and I noticed the Deer again, into an activity, but Jonathan standing apart and not participating. This is not unusual. He often cannot bring himself to join in a group. However, by the next day, he was swimming, singing the camp songs, and participating in all the activities. At closing circle he never missed a beat when Carolyn asked the kids to sing their favorite camp song. He knows all the motions and all the words! My Adam has had a very challenging summer. He went to summer school and the closing note from the teacher said something to the effect that she had never had a child that she couldn't engage at some point in the four weeks, but with Adam she couldn’t. He was defiant and withdrawn the whole month. But that wasn't the Adam at Family Camp! I have NEVER seen a belly-laugh out of him like the night the Magician performed. And at closing circle he took the feather and said his name, his group, and his favorite part of camp! What an accomplishment for a child who wouldn't even say his name to his teacher! This has been a particularly difficult year for me as a parent. I'm beginning to see the challenges with my kids that I keep reading about in the FASD literature, but didn't really grasp until recently. I've had moments where I questioned whether I could effectively parent one or two of these kids. But this weekend gave me my second wind! I feel rejuvenated and ready to tackle another year of trying to keep my kids safe and happy. I often hear the question, (because of the many children I've brought through the FAS clinic) "How can we help you?" That's been a hard question to answer until now. Family Camp is definitely a major way you can help those of us trying to raise FASD kids. Thanks to everyone involved for their great work. Linda Duncan
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Short stuff  Jordan with his adoptive parents, Rick and Darlene. |
Small kid in grade seven.
He has a very short temper.
Or he is having a good time on the soccer field.
Right on time before the bell.
Too small to be going into grade eight.
Sometimes has to do announcements by himself.
Too hard homework for him.
Unicorns are not a good sign to him.
Friendly in many ways.
Funny when he wants to be funny.
FAS Day 2003
Four years ago, in 1999, three people, Bonnie Buxton and Brian Philcox of Ontario, Canada, and Teresa Kellerman of Tucson, Arizona, came up with a simple idea to help promote FAS Awareness. It is working.
Their idea? What if, on the ninth minute of the ninth hour of the ninth day of the ninth month of the year one thousand, nine hundred and ninety-nine, we asked the world to remember that during the nine months of pregnancy, a woman should not drink alcohol? And, what if we also asked the world to remember those millions of people who will struggle all of their lives, because of prenatal alcohol exposure? At this magic minute in history, could we begin to change the world?
Bonnie Buxton reflects on those first efforts:
A lot of people were skeptical about FAS Day when it started, but Brian and Teresa and I figured we had nothing to lose, because the general media couldn't have been less interested in this issue. What the three of us didn't predict was that the real advantage of FAS Day was that it gave people a chance to work together on this issue. That made everything start to bubble and percolate, as people started to generate ideas for building awareness in their own communities, and began sharing these ideas. FAS Day stopped being just a day, and turned into an attitude that, yes, we can inform and educate, and yes, we can turn this thing around. And of course, some people are now calling it FASDay. We get e-mails saying, "Can we call it FASDay?" and we say, "Call it whatever feels appropriate to your organization and your community."
People all over the world did things to commemorate September 9th that first year. By the next year it was tradition. This Sept. 9th, some people paused for a moment of reflection, some people rang bells at 9:09, and some people organized events in their community. Below is a summary of what 11 people around the world did to help promote FAS Awareness. For more information about FASworld, please check out the main website at: http://www.fasworld.com.
CANADA
Dawson City, Yukon:
We held a Pancake Breakfast and participated in the Bell concordance. The radio station CBC phoned us at the church this morning and I did a 5-minute live interview. We raised a bit of money that will be sent on to the FAS Society of the Yukon. I also organized the Pregnant Pause where each establishment in Dawson has agreed to refrain from the sale of alcohol at 9:09 pm for one minute. There will also be donation jars and information set up.
Regina, Saskatchewan:
A gathering was held outside a downtown church for bell ringing and speakers. What was unusual and particularly successful for us was that two young women with FASD agreed to speak—a new experience for both of them. They were a huge success and were interviewed at length by the media following the event.
EUROPE
Berlin, Germany:
FAS Day in Germany was celebrated on the 6th in Prof. Spohr's Clinic, with talks from Prof. Löser on FASD, and Prof. Spohr on FASD and Ritalin—the results of his Ritalin questionnaire were also made public. A consultant from the Berliner Charite Hospital talked about FASD and Growth Hormones. After lunch we had two open discussions: the first about problems associated with the acceptance of FASD by Social Services, and the second about parents advising parents. A great day!
England:
On September 4th Gloria (Founder FASawareUK) presented at a meeting with the staff of the Alcohol Harm Reduction Strategy Unit at the Home Office London. A large advertising company has spent the last 6 months developing a high profile ad campaign, for FAS. They will be launching their first ad on September 9th, 2003, in all high-profile pregnancy magazines. Three FAS exhibitions were held throughout the week in hospitals in West Lancashire, and every hour during FAS Day, a radio interview with Wish FM was repeated on the news.
Warsaw, Poland:
This year we organized the 3rd FAS Day in Warsaw, in co-operation with the Institute of Mother and Child and the National Agency for Solving Alcohol Problems. We had a special guest speaker—Toni Hager from Kids Can Learn (http://www.kidscanlearn.org/). It was a great event and I was glad that many doctors were involved and grateful for the special support from Ledziny (the town where FASDay in Poland "was born"). Many people representing our local authorities also went to Warsaw to take a part in this event.
UNITED STATES
Cape May, New Jersey:
Here in Cape May, New Jersey, we celebrated by having an open house with information, a "Worth the Trip" video showing, and refreshments. A candlelight and bell-ringing ceremony was held at 9:09 PM. Articles were written up in local papers with state and local proclamations. A good "Day."
Chico, California:
For our first FAS Day, on 9/9 at 9:09 bells rang at California State University Chico (known as one of the #1 party schools in the USA). Our mayor read a FASD proclamation on 9/2, and Dr. Kathy Page made two presentations. We delivered over 90 framed FASD awareness day posters to hang and over 90 baskets with K(NOT)s to doctors and clinics in our county. The knots were tagged with pink and blue info tags indicating where to get information to stop alcohol and drug use and directing people to the www.fasworld.com website. We had two radio interviews one short interview for the news, and one long 30-minute tv-show interview, both on FASD.
Flagstaff, Arizona:
FAS Day in Flagstaff, AZ began with a front page article on FAS in our local paper, instigated by Cindy Beckett, who recently finished a doctoral dissertation on FAS. At 9:09 AM, the bells were rung at Epiphany Episcopal by Bob Schacht, a member of the church, and co-author of a manual on adolescents and adults with FAS for non-medical service providers. Bob also set up a display on FAS, right next to the bell rope, which he then moved to Northern Arizona University and displayed next to his office, and at a training event the next day.
Illinois:
For the love of Kristy, my daughter, and all the children with FAS, I got the first proclamations in Illinois signed by Senator Patrick Welsch. On 9-9-2003, Kristy, Senator, Dr. Christine Schmitt, and I were on ABC News bringing awareness to FAS. ABC also posted some FAS websites. Never dreamed I could pull all this together— thank you Theresa Kellerman and all FAS DAYERS!
San Antonio, Texas:
The Por el Amor de los Niños research project of San Antonio, Texas, hosted a FAS Day Symposium on September 9th, 2003 with over 80 in attendance, including project participants, representatives of health organizations, members of organizations working on FAS prevention in Texas, parents, youth and interested individuals. Activities included poster displays of community prevention projects, videos, discussions about medical aspects and parenting, plus a "Synergy" dinner to link project participants with community organizations. An article about the Symposium will be published later this week in the San Antonio Express News.
Washington, D.C.:
United States Senator Lisa Murkowski (R-Alaska) has introduced a resolution in the United States Senate asking the President of the United States to designate September 9 of each year as National FAS Awareness Day in the United States.
NOFAS awards recognize outstanding leadership
September 23, 2003
Senator Tom Daschle and his wife, Linda Hall Daschle, hosted the 10th annual Leadership Awards Benefit for the National Organization of Fetal Alcohol Syndrome (NOFAS), in Washington, DC on June 18, 2003. Long-time supporters of NOFAS, Senator and Mrs. Daschle are powerful advocates on issues relating to prenatal exposure to alcohol. Sam Donaldson of ABC Radio Network served as the Master of Ceremonies.
The Leadership Awards recognize community leaders and members of Congress for their outstanding leadership and commitment in working towards prevention of alcohol related birth defects.
The Excellence Award is given to one person for “outstanding efforts in support of the national fight against Fetal Alcohol Syndrome.”
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Iceberg is thrilled that Ann Streissguth, PhD., received the Excellence Award for 2003.
She has been dedicated to not only working toward prevention of FAS, but, through her pioneering research, she has been involved in finding ways to describe the disability and in finding solutions to the problems it brings. Dr. Streissguth founded the Fetal Alcohol and Drug Unit at the University of Washington in 1974 and is one of the founders of FASIS and an Iceberg board member. She is a teacher, consultant, speaker, traveling throughout the world carrying the messages about FASD. She is an advocate for and personal friend of many individuals who suffer with FASD. Those of us privileged to know her and work with her feel deep gratitude for the depth of commitment Ann has given to this issue.
The Leadership Awards were presented to Senator Ted Stevens of Alaska, Senator Ben Nighthorse Campbell of Colorado, and Congressman C.W. Bill Young of Florida, Neal Baer, MD, Executive Producer of Law and Order: Special Victims Unit, and Mark Brown, Chairman, The Mohegan Tribe.
To read more about the Leadership Awards Benefit and learn more
about NOFAS, visit the NOFAS
web site. (http://www.nofas.org/main/front_
page_Announce/nofas_annouce4.html)
National FASD biological parents gathering
The first national gathering of biological parents of individuals who have Fetal Alcohol Spectrum Disorder (FASD) convened in Baltimore, Maryland, on September 8 and 9, 2003, The National Organization on Fetal Alcohol Syndrome (NOFAS) organized the summit called “Hope for Women in Recovery: Understanding and Addressing the Impact of Prenatal Alcohol Exposure.” Two of our editorial board members, birth mothers of children and young adults impacted by FASD, were presenters at this conference.
Birth parents experience numerous emotions surrounding the diagnosis of their children that range from guilt and shame to anger, sadness, and fear. Many birth parents have said that they are afraid to come forward due to stigma that exist and the sense that others will be angry with them. This fear and anger has driven wedges between birth parents, foster, parents, and adoptive parents as well as professionals when they all have the well being of the child as their primary goal. Consequently, many individuals felt that a coming together of birth families would be helpful in beginning to find ways to break through the stigmas associated with alcohol abuse by women, as well as provide a safe place to share ideas and feelings.
Summit events included FASD education, an overview of the resources in the State of Maryland, and a Town Hall Meeting where the individuals could testify about their difficult experiences, strengths and hopes. NOFAS is preparing a summary of this town hall meeting. The Substance Abuse and Mental Health Services Administration (SAMHSA) (http://www.samhsa.gov/) and the FASD Center for Excellence (http://fascenter.samhsa.gov/index.cfm) will use this information, as well as summaries from the many other Town Hall Meetings that have been held across the country over the past two years, as part of a report that will be presented to congress and others who affect policymaking.
Drug and alcohol treatment centers from the entire state of Maryland transported women in treatment to the summit. For some of the women it was the first time that they had recognized or even thought about the possibility that their alcohol abuse was the reason that some of their children were experiencing health issues or behavioral difficulties. The conference was also attended by a number of adoptive, foster, and kinship families as well as counselors and other individuals who work to assist women in recovery and people with FASD.
From this beginning, it is hoped that this core network of "Warrior Moms" will find ways to replicate this summit in other places, to find ways to break through the stigma, to find ways to support addiction treatment centers in including FASD as part of their curriculum, to provide support and strength to other birth families, and, certainly, to begin to bridge and heal the gap between all of those who care about our family members with Fetal Alcohol Spectrum Disorder.
Learning to spread your wings
I stand before you, for all to see
That hopes and dreams can be possibilities,
And a single dream can become a reality.
That with your hand stretched out,
Can disfigure all reasonable doubt.
If only eyes could see under our skin,
All the true beauty and talents within.
Open your mind to the world's soul,
Learn to be triumphant and achieve each goal.
To the loved ones who see us through,
Even if we forget to say, truly thank you.
Chorus: If you faced the odds against you,
Accomplished what others doubted you could do,
Overcame obstacles when you tried,
You'd be a step closer to spreading your wings
and learning to fly.
For the eyes that have seen, all we have been through,
Not defining us, as our disabilities, but the real you.
Our mind may not work likes yours
But there's always a window, when locked doors.
There's no point to blame, no reason to feel ashamed.
For we were not born wrong, our life just made us strong.
Chorus: If you faced the odds against you,
Accomplished what others doubted you could do,
Overcame obstacles when you tried,
You'd be a step closer to spreading your wings
and learning to fly.
There are many things that we may lack
But we won't let this hold us back.
We live in a world that does not always understand,
But our loved ones will be there with a helping hand.
If we work together, not apart,
Our lives will have a chance to start.
And when we are able to stand so tall,
We will not forget to thank you all.
Chorus: If you faced the odds against you,
Accomplished what others doubted you could do,
Overcame obstacles when you tried,
You'd be a step closer to spreading your wings
and learning to fly.
We thank you, even if we don't say,
we are the will and you the way.
We thank you for being so strong,
helping us to see right from wrong.
We thank you for all you have done.
Without you, so much would be left undone.
We thank you, even if we forget to say it.
Chorus: If you faced the odds against you,
Accomplished what others doubted you could do,
Overcame obstacles when you tried,
You'd be a step closer to spreading your wings
and learning to fly.
www.FASiceberg.org
iceberg_fas@yahoo.com
FASIS - Iceberg
P.O. Box 95597
Seattle, WA 698145-2597