Maryellen W. is a 22-year old living in Utah. She recently spoke with NOFAS Media Producer, Andy Kachor, sharing her insight on living with FASD and the stigma that surrounds the disorder.
Andy Kachor: Hi Maryellen, thank you so much for sharing your story with us. Would you mind introducing yourself and telling us a little bit about yourself?
Maryellen W: Hi! I was born in a small village in Russia. My mom was an alcoholic and a drug addict who used and drank when I was in her belly. When I was born she put in me in a pig trough, where pigs eat, and then a nurse found me and brought me to an orphanage. I was later adopted by two wonderful people when I was 21 months old. I lived in Michigan until I was fifteen, when I moved to a group home in Arizona, staying there for about two and a half years. Then I moved to Utah.
AK: Could you tell me about how and when you were diagnosed with an FASD?
MW: I think I was about ten when my mom found out that I had FASD. I’d had a lot of testing done by different doctors and we finally went to some sort of doctor who did a test and told me I had FASD. I’d never heard of it before so I did a lot of research and it kind of made me feel bad.
AK: How did your life change after being diagnosed and how did you adjust to living with FASD?
MW: Finding out I had FASD really did change my life because my mom had to request extra help from my school IEP [Individualized Education Plan] because even though I was smart and did my homework, there were things I needed help with so the teachers helped me. Once I got into high school, everything changed. No one respected me and I became an outcast, so I started using drugs and just went haywire! When my mom found out that I was doing drugs, she looked into some group homes and sent me to a group home in Arizona to get help.
People with FASD shouldn’t freak out because of it. It may be bad, but if you can look at it the right way and you can control your emotions and get the right medication, you can have a good life! I have a mom and a dad and I live with someone right now who owned the group home I was in and they’ve been helping me ever since I was fifteen. I don’t know if this is the same for everyone with FASD, but I can’t hold a certain amount of money because I spend it really fast and can’t control it.
AK: Could you talk more about your experience with the group home in Arizona? How was it living with other people with FASD and did that experience help you?
MW: I was scared and really rebellious when I first moved into the group home. I refused to do anything for the first few weeks, but after a while I realized that I wouldn’t be going home so I might as well start the program. Later on, another girl with FASD came to the group home and we butted heads. We still butt heads now, even though we’re both outside of the program. I think that people with FASD don’t get along because we’re too similar and we butt heads.
The program helped. The staff had to do a lot of research because at first they had no idea what FASD was because they’d never dealt with it before. Once they did some research, they knew how to handle us. We [those of us with FASD] had some ground rules we had to follow, but we still had less supervision than the others. It was weird.
AK: I’m glad that the staff was able to research FASD to better help you and hopefully others because I know that most people aren’t really aware of FASD.
MW: Yeah, when I was living in Michigan I was hospitalized a few different times and the doctors never knew about FASD and they wouldn’t even do the research. They would let me wander the halls and get into fights and they still thought I was just a normal girl. They didn’t know why I acted differently and they didn’t care
AK: I was wondering if you could talk a little more about the difficulties you had with drugs when you were younger and how you were able to break out of that?
MW: My friend introduced me to cigarettes when I was eleven but I didn’t start smoking until I was thirteen. When I turned fourteen, I was introduced to meth, which messed everything up for me. When I was twelve, I started drinking and ever since then, I have always craved a drink. It doesn’t matter if it’s Vodka or beer; I need to drink something because if I don’t, my mind just races.
AK: I know a lot of people struggle with drinking and recovery, so I wish you all of the best. I was wondering if you would mind talking about what you do now; if you have a job or any hobbies?
MW: I used to work for a facility in Cedar City, Utah. It was a group home that I’d lived in after I left the group home in Arizona and the person who ran the program wanted me to work there so I did for maybe about two years. Then after a situation happened at the group home I quit, and I don’t really want to work another job because I won’t know what to do–the only thing I’ve ever done is work at a group home. It kind of sucks! I mean, I’m home all of the time and all I really do is watch movies and go to the library. I do like going to the library because I love to read. During the summer I like to sit outside and read, and during the winter I like to snowboard.
AK: Reading and snowboarding sound great! I know it can be difficult to find a job and it sounds like you’re doing the best you can during a difficult situation. Could you tell me more about what books and TV shows or movies you like?
MW: My favorite TV show is Bones, which is an investigative show. It’s really good! I’ve seen almost the whole series, and I’m excited because they’re making a new one soon. I found the show on Netflix; I’ll just go on there and watch for hours and hours. I also like to read mystery and romance books. I remember in school they would assign us books that weren’t interesting so I never got into reading then, but once I got out of school I was able to pick whatever I wanted. So now I get books and I just can’t stop reading them!
AK: Cool! Could we switch gears and talk about your friendships and relationships and maybe some of the challenges of social relationships, if you’re comfortable doing so?
MW: Yeah, I have a few good friends from Michigan and only one of them has FASD. We kind of get along but, I mean, I haven’t seen her in over ten years. We talk on Facebook, but it’s not like we’re talking in person.
Relationships are hard. With dating, I want to act normal around my date but I know that they’ll find out about my FASD eventually so I feel like I have to do all of this explaining about my whole entire life.
AK: I know that FASD can make having relationships and friendships challenging. Is there anything you would like for more people to know about having FASD?
MW: People with FASD have our problems, but we can also do well in this world. A lot of people say, “You can’t do this; you can’t do that.” Well, it’s a bunch of bull. We can do anything we want if we put our minds to it. Don’t let other people put you down! Hold your head up high and believe what you want to believe. If you can do it, you can do it. Don’t set yourself up for failure. If you’re looking at the bright side of life, you can do a lot of good in this world! That’s how I look at my life. Yeah, I have a lot of people telling me, “You can’t do this or you can’t do that,” but you know what? They’re wrong, and I can do whatever I want if I put my mind to it. Some people say that I can’t go to college because I can’t handle all of the homework. You know what? I’ll do it. If I want to do the homework, I will! I’ll put my mind to it and do it!
AK: Well that’s a great attitude, and I thank you for taking the opportunity to share your story. Is there anything else you’d like to add?
MW: Yes. People without FASD may look at people with FASD and think that they don’t want to be friends with that person. But they shouldn’t judge a book by its cover. Get to know the person and you may find out that they’re really nice.
AK: Great! Thank you very much, Maryellen.
MW: This was great!