A Letter from Ann Streissguth to Campers

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A Letter from Ann Streissguth to Campers
at the First Summer Camp in the U.S.
for Adolescents and Adults with FAS/FAE

Fetal Alcohol And Drug Unit
Department of Psychiatry and Behavioral Sciences
University of Washington School of Medicine




Dear Campers,

On Being The Same And Being Different:

  1. All of you have one thing in common: a diagnosis of fetal alcohol syndrome (FAS) or fetal alcohol effects (FAE) or something similar, like alcohol-related neuro-developmental disorder (ARND). These are all part of an array of fetal alcohol spectrum disorders (FASD).
  2. This means that you all had mothers who drank a lot of alcohol during their pregnancies with you. Those of you who are adults were born at a time in history when most women didn't even know that the alcohol they drank could hurt you. (1981 is when the Surgeon General of the U.S. recommended not drinking alcohol during pregnancy, or when planning a pregnancy.)
  3. But your mothers were different from each other in how much alcohol they drank and when they drank. They probably had different patterns of drinking and different lifestyles.
  4. Some of you were raised by the mothers who gave birth to you. Some of your mothers were able to stop drinking to help you; others were not able to stop because drinking alcohol can be addictive and hard to stop. Alcoholism can also be a deadly disease, and some of your mothers may have died of alcohol problems.
  5. Some of your mothers thought that someone else could raise you better than they could, and they gave you up for adoption. Some of you were raised by your father or your grandmother or other relatives when your mother couldn't care for you. Some of you lived in many different foster homes. Some of you never knew your original families at all.
  6. Some of you had bad things happen to you during your lives, like being physically or sexually abused. But many of you also had warm loving families, at least for part of your life. Some of you have had support and help as youth and young adults. Others have had to sort of take care of yourselves.
  7. Even though you all have the same diagnosis, you are different from each other in many ways. Some of you were diagnosed as tiny babies. Others were not diagnosed until you were all grown up. Some of your parents knew while they were raising you that you had FAS or FAE, but others did not know because you had not been diagnosed yet.
  8. When FAS was first described as a birth defect in 1973, the first patients were very young children. Nobody knew exactly how they would turn out as they grew. Parents who were told that their children had FAS or FAE were somehow able to figure out how to give them extra help and support as they went through hard times growing up. But parents who did not have this information about your diagnosis had a really hard time figuring out why you didn't always catch onto things like other kids did, even though you may have seemed so cute and smart.
  9. A lot of you probably had trouble asking for help when you were growing up, because you didn't know what you needed either, and you didn't know how to ask for help or what help to ask for.
  10. Even today, nearly 30 years after the diagnosis of FAS was identified, a lot of doctors, teachers, and counselors really don't understand what FAS or FAE means. Having this diagnosis often doesn't automatically give you the help you need once you're out of school.
  11. A lot of communities where you live don't know how to provide you with the kind of help you need as young adults. So we hope to be able to educate them, and sometimes even change the laws, so that you can get the kind of help and support you need to be good citizens in your communities.
  12. You are an important part of this process. You can tell us (and the other professionals you work with) what works and what doesn't work for you. What have you hoped to do but have been unable to do. And what might have made the difference.
  13. Remember though, what works for one might not work for the other. Even though you all have FASD, you are each different as well. The important thing for each of you, is to know yourself, and what works for you.

On Working:

  1. Work is good; it makes all of us feel productive.
  2. But finding the right type of work is important.
  3. Choose something you like to do (work with animals? Work with people? Work by yourself? Work with plants? Work with your hands on projects by yourself? Work with your hands on projects that involve a social setting?)
  4. Get the right training for the work you like. (Sometimes working with a mentor, or starting as a "trainee" or "helper" can be helpful)
  5. Should you tell your boss about FAS/FAE? (Sometimes it really helps to tell them. It also can help to tell them how much you want to succeed and what help and kinds of supports you need to succeed. And also what you need when things "fall apart.")
  6. Find a job site that fits your own tempo. (Is it too fast-paced? Too unpredictable? Too demanding? Too confusing?)
  7. Are the people friendly and supportive?
  8. Is it clear who is in charge?
  9. Are the expectations for the work clear?
  10. Do you know who to ask if things are unclear?
  11. Do you know who to go to if things start going bad?
  12. Is there someone outside of work who can help you if things "fall apart" and you can't fix it yourself at work? (This is often essential)
  13. Make a detailed plan for what to do with your paycheck, how to meet your expenses, and save something. (Your parents or your advocate can help)

On Leading A Healthy Lifestyle:

  1. Have some fun every day and laugh a little.
  2. Take care of your body, it's the only one you've got. Keep it clean and healthy.
  3. Eat good food, but not too much.
  4. Exercise every day.
  5. Don't mix up your days and nights. Get plenty of sleep.
  6. Develop some hobbies and recreation.
  7. Don't use alcohol or drugs.
  8. Make reasonable goals for yourself.
  9. Enjoy healthy work.
  10. Learn to ask for help when you need it.
  11. Be part of a community and give to it.
  12. Respect and cherish our earth and its creatures.
  13. Find peace in yourself.

Old Swedish Proverb:
"No one fails who has done their best."



All best wishes, and call or email us if we can be of any help now or in the future.

Dr. Ann Streissguth
180 Nickerson St., Suite 309
Seattle, WA 98109

Phone: (206) 543-7155
Fax: (206) 685-2903
Email: fadu@u.washington.edu
Website: http://depts.washington.edu/fadu/
 

© 2002 Ann Streissguth

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