Living with Fetal Alcohol Spectrum Disorder
Good morning. I’ve been asked to speak today about Fetal Alcohol Effect and what its like living with it. Let me see a show of hands: how many of you know somebody that has or is effected by FAE or FAS? There are some quote “myths” out there about people with FAE.
Some of those myths are: People with FAE can’t get a good job. Well, I am here to say those mysths are wrong. I’ve had several jobs both at Alaska Wild Berry Products and on Elmendorf Air Force Base. I do admit for myself, it has been difficult to find a job that I can get to everyday using my transportation resources.
I have had Anchor Rides for several years and the People Mover travel training with Sandy. It was a two week course to learn how to ride the busses to get to my job at Alaska Wild Berry.
By having a job it has helped me to build more self confidence. Also, to have more e, to have more experience with working with the public. Living with FAE has really changed my life. For example: making and keeping friends, socializing with people in my age group, and many other things.
Most people who meet me don’t know I have fae. People think that I’m your everyday ordinary adult. So, I have to tell them that I have FAE. I know that it isnn’t my fault that my biological mom drank while she was pregnant. I also know I had no control over her actions.
Over the years I’ve really struggle both in the social and academic parts of life. But I received help with these parts of life. Since I was in elementary school I’ve been in the special education program. Being in this program has helped me a lot.
I know that I am in fact different. Different from your ordinary adult. Not being able to make rational decisions, I get frustrated at myself for doing something stupid and not taking the consequences into consideration. When I do get frustrated at myself, I sometimes take my anger out on myself.
As I get older, the chances of me using alcohol and then becoming an alcoholic are higher. But, I can stop this by not using alcohol at all!! But the effects like not being able to think right and having to live in an assisted living home are permanent. Everyday is a new challenge. All I can do is to take one day at a time.
When I turned eighteen I wanted to find my biological mother. I was adopted by Bill and Donna Jamison. If I do ever find her, I would ask her: why did you put me up for adoption? Having FAE is like having a piece of the puzzle missing.
May be someday scientist will come up with some kind of medication to help those affected by FAE.
Just recently, specialists and other doctors came up with a new diagnosis to describe those who were exposed to alcohol while in the womb. The new diagnosis is Fetal Alcohol Spectrum Disorder. Some people get confused when I say "FAE" or "FAS". So let me explain.
"FAS" stands for Fetal Alcohol Effect. "FAE" stands for Fetal Alcohol Syndrome. I don't know exactly what the difference is between FAE and FAS. I do know that FAS has certain facial characteristics that accompanies the syndrom.
I've really changed on the way I look at life itself. I can really relate with other people with disabilities, whether it be physical or mental. I do have some fears about having FAE. Some of those fears are: not knowing if my spouse will accept the fact that I have FAE? Will she still love me? Does she want to have children or just adopt? Whatever her decision is, I think it will be the right one. I had the opportunity to camp with some people with disabilities. It was with Challenge Alaska.
One quote that I found that really goes along with my message about what life is like with FAE is from Gandhi. Gandhi once said, "Live as if you were to die tomorrow. Learn as if you wre to live forever." My mom says to me a lot of times, "Chris, take one day at a time."
To sum everything up I've said this morning: Be patient with us who have FAS or FAE and Fetal Alcohol Spectrum Disorder. We're doing our best. In closing, I would like to thank you all for listening and for giving me all the support. Especially my family and friends.