There are some interesting stories behind the video "FAS: Everybody's Baby." One is that the boy who was to play the part of the teen with FAS didn't show up for the two major rehearsals just before taping began. So we decided we would just have to use my son John (who has full FAS). It turned out to be a good thing, as he gives a very honest portrayal of what FAS really is like. John, at 18, was the oldest of the group, and the girl who played the part of the Special Olympics volunteer was only 14. All the teens treated John like an equal, they didn't patronize him or ignore him, he was just one of the group. I think it was the best example of social integration he has ever experienced. (Of course, I was always there, and John would need supervision in any social group, because of his poor judgment and impulsive behaviors, especially hugging too close for too long and unwanted flirtation).
My favorite parts of the video are the parts that I wrote. (Forgive my lack of humility here.) There is a demonstration by two students showing how the right brain and left brain work together (or don't work together, as is often the case with FAS). There is also a comparison of a "normal" teen standing back to back with the teen with FAS, with some insightful repartee. I am touched deeply every time I see it.
We hired a professional technical director to help with the editing. During the 6 months of putting the video together, we talked a lot about FAS. I brought in the article that I wrote after attending Ann Streissguth's conference on secondary disabilities. My editor read them over, then he asked me some interesting questions. He asked if drinking during pregnancy could cause subtle problems that might not be as severe as FAS? I said yes. He said this to me: "You know that I was adopted, right? Well, the reason I was taken from my mother was her heavy drinking. I know she drank a lot when she was pregnant with me. I had a real hard time in school and I seem to have a lot of problems with math and I have ADHD. Maybe I have FAE?" Perhaps. Even before he brought this up, I had some clues. He is not too tall, very slim, charming and good looking, immature for his 28 years (dating an 18 year old girl), talented in music and artistic, scatterbrained, broke all the time, hanging out with questionable characters, engaging in risky behaviors, forgot about half of our appointments, but very friendly and cheerful and has a great sense of humor, lives in the moment, shows poor judgment at times, rather impulsive, doesn't worry about anything, but is quite intelligent and insightful.
He is just one of thousands were affected by prenatal exposure to alcohol, enough to cause some difficulties in his life, but not enough to prevent him from functioning in a relatively safe and productive lifestyle. How many others are out there, just outside the parameters of FASD? Surviving, maybe even thriving, but with so much lost potential, and at risk of struggling with the secondary disabilities of addiction and depression and unplanned parenthood, possible problems keeping a job or staying out of jail, ending up on the streets or in prison.
Back to John's role in the video. Of course, he has a terrible memory and could not memorize his lines, especially in the short time we had before the taping began. I printed out his lines in large font, put them in transparent covers in a notebook, and stood in front of the camera flipping pages for him to read. He ended up doing a fine job, and even added a few unplanned FAS behaviors. Grabbing his crotch was one. My technical director said, "Gee it's too bad we don't have any other takes of that scene." I said, "Leave it in - that's what FAS is all about!" John agreed. He is so generous with allowing others to see his FAS behaviors in such a personal light. He knows that sharing these incidents is helpful to other families who will understand that this is normal behavior for kids with FAS disorders.
John is very proud of his acting career. The video has been shown on our local cable channel several times, so every once in awhile someone comes up and says to John, "Hey - I saw you on TV!" John said to me, "Hey Mom, I'm famous, huh? Can I get a limo? Please?" I had to explain why he couldn't have a limo, but he has always wanted to ride in one. He finally got his chance this spring when he took his girlfriend Sheena to her senior prom. Photos here: http://come-over.to/Johnny/Prom/. This is such a great Love Story, because usually adults with FASD are not exactly lucky in the relationship department. These two are at the same level emotionally and socially, and are getting lots of guidance on how to be respectful, appropriate, and safe. Not that many adults get this kind of guidance, or if it is offered, it is not accepted. John has learned to accept both the limitations of his disability and the restrictions he needs to be safe from harm (from himself and from others).
At the beginning and end of the video you will see John and two other boys playing music as background for the monologue. The boy on the right is John's brother Chris, and the other boy is Chris's friend. Chris wrote the music they are playing in the video, and he was giving cues to John about when to change the rhythm and when to stop. This is the only time John has played in a group. It's his dream to be able to play drums in a group. Just a week ago, John was asked by our church music director if he would like to play the Conga drums sometimes for some church services. John just received a set of Conga drums for his 25th birthday, and now he is one happy drummer! I think he is the luckiest young man in the world. Even with FAS, he has so much going for him. But all the protective factors are in place: Diagnosed at birth, adopted right from the hospital, qualified for DD services, stable family environment, good role models, staff who understand FAS, meds that work, close supervision at all times. All the pieces need to be in place for this kind of success.
I hope this glimpse behind the scenes helps you to enjoy the video. And I hope the glimpse behind the scenes of John's life helps you to appreciate what it takes to make life in the FAS Lane fun and safe.
August 1, 2002