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The Triumphs and Troubles of Living with FASD: An Interview with Self-Advocate Marlee
People are not just one thing. As we know, living with FASD can lead to challenges. It can also highlight the unique strengths and positive qualities of those with them. To help explore this topic and provide a living experience perspective on the matter, FASD United has interviewed Marlee, a resilient, wise woman with an FASD who has decided to share her story of adoption, family, and disability awareness.
At almost 19 years old, Marlee has proven that despite how you are raised, and with neurodiversity, success stories are entirely possible. She describes herself as someone with a love of music who is currently learning the ukelele and spent a lifetime singing. In addition, reading and writing have provided joy and comfort. Marlee was born and raised in Oklahoma and currently resides in Tahlequah where she attends vocational school studying office administration.
Unfortunately, Marlee did not really know her birth mother, and tragically, she recently passed. As for her father, “My birth father had put me and my birth mother through a lot of crap,” Marlee says, “It was a horrible environment…it wasn’t easy to accept, but I can’t change what’s already happened.” Then, at age nine, Marlee’s adoptive parents divorced because her adoptive father “was not the best either.” In spite of this, Marlee found a father figure in the form of her stepdad who came into her life around age twelve. In this childhood environment, any person could feel overwhelmed or potentially bitter, but as Marlee states meaningfully, “Not all people are meant to stay in your life forever, and that’s okay.”
Relationally, Marlee and her adoptive mom are close, although she notes they struggled during her teen years (which is to be expected with teenagers). “Me and my mom do try to show we care in our own different ways,” Marlee says, explaining that although neither of them is very affectionate, they have learned each others’ love languages to show an effort for one another; this often comes in the form of patience. With her stepdad, Marlee was a bit skeptical at first due to her relationships with her birth father and adoptive father, but over time realized she could trust him as a parental figure. She notes her little sister and brother, who were adopted from another family, and then older brother who is her adoptive mom’s biological child, “I also do have two adoptive siblings, we just get along like regular siblings. We love each other, but there are fights sometimes.”
Marlee was diagnosed with FAS around three years old but did not find out until years later at eleven. “Most of the teachers thought I was autistic, or like “stupid”, but that wasn’t the case at all.” Her kindergarten teacher even taught her as if she were on the autism spectrum when “she knew fairly well that wasn’t what I was diagnosed with.” With the help of her passionate adoptive mom, Marlee was able to rework the inaccurate educational approach and framing that she was somehow unintelligent. In fact, she was at a college reading level in 10th grade.
When she became aware of her diagnosis, “I didn’t really know how to take it at first…I was kind of known as the weird kid back in high school.” Marlee describes feeling confused and somewhat outcasted by her peers and authority figures, even experiencing bullying throughout her formative years. She explains that what would have helped this feeling was “people actually acknowledging that it’s not autism and it’s not just something that says “you’re stupid,” no that’s not what it is, people with disabilities can be really smart.” Traditionalist values of those in Oklahoma also impacted her development, “I wish people could break out of that and say “hey new things are happening,” people with disabilities do exist.” Marlee emphasizes that people with disabilities are human first and are just like everyone else in that regard. “Some people will just see someone as their disability and not as who they actually are. It’s like the saying don’t judge a book by its cover; don’t judge someone by their disability either.” Assumptions about intelligence are harmful to those living with FASD and neurodiversity generally.
Marlee notes her strengths, “I usually show a lot of kindness to people because I remember what the feeling was of being lonely and feeling like an outcast.” You never know what’s going on in people’s lives, “not everyone has the same story you can’t just assume that it’s the same with everyone.” Due to this outlook on life, Marlee has “the ability to understand people because I can usually kind of relate to what somebody else is going through.” Emotional intelligence and empathy are familiar concepts to her. As far as challenges go, “I really struggle with being able to tell if someone’s lying or not,” and in a similar vein, “whether someone is joking or not.” Marlee notes not being able to read social cues as well as she’d like to, claiming, “It really messes with things sometimes.” All in all, Marlee is a complex human being whose disability and life have made certain traits easily accessible and others not as much.
Despite the aforementioned challenges, Marlee perseveres, hoping to continue spreading awareness for FASD, starting with her school. “I’ve been trying to educate more people about what FASDs are, the symptoms, and basically just educating people on what it actually is so nobody assumes anything.” Marlee is currently working on this, making posters to put around her school to raise awareness. Although she hasn’t put anything up yet, she has begun with her friends and one-on-one conversations. “I’m still working on finding more about it,” Marlee claims, as increased knowledge and education are so important for this topic. “It can be hard to work with, but you just gotta get through it,” she then adds, “I’ve seen FASD a lot more now, it seems like it’s becoming more common. There still needs to be awareness raised because there are people that don’t know what it is.” Although she is just one person, we commend Marlee for doing her part in FASD education and awareness. What an amazing self-advocate and individual.
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