"I no longer hurt or punish myself by trying to be like everyone else."
Dani was working as a camp counselor when he realized that the children he was looking after looked a lot like he did as a child. It was a reflection of himself that led him to discover Fetal Alcohol Spectrum Disorders (FASD) and, above all, the FASD Visual Foundation , whom he now considers "his family." "Now I don't punish myself anymore, I don't hurt myself trying to be like everyone else," he says with the satisfaction of someone who has been able to understand and let go of the guilt he carried for years.
Now 36, he works as a snowboard instructor and in a ski rental shop during the winter, and in the summer, he "makes ends meet," as he puts it. His life plan includes starting a mountain and climbing guiding company and having a family. "I have so much love to give. I love children, I always have, but sometimes I think it's difficult to have them because of my life." This is his present and his vision for the future, after a few years that haven't been easy for him, years in which he's surely had to work harder than most.
Neurological alterations in fetal alcohol spectrum syndrome
Living and growing up with FASD
Brain damage caused by alcohol consumption during pregnancy in individuals with FASD is irreversible and can lead to physical problems and cognitive, behavioral, socialization, and learning difficulties . This often results in challenging school experiences, legal problems, inappropriate sexual behavior, substance abuse, dependency, and difficulties entering the workforce.
Upon discovering he had FASD, Dani understood many of the difficulties he had faced during his school years : "I always felt rejected, like they didn't want to be with me, because I was very nervous, very mischievous, I did a lot of pranks, I was very restless, and I was always demanding attention that I probably wasn't getting at home." And to this was added the constant effort he had to make to understand, to follow the classes, take the exams, and learn, "in a very rigid environment where I wasn't given any opportunities."
I've never been able to maintain a circle of friends, and even now I don't see myself fitting in anywhere. I think people see me as someone who makes them uncomfortable, who bores them by constantly seeking attention, who's just tiresome.
Thus, through repeating courses and having to face a family that "thought I was lazy, that I didn't do things because I didn't want to," he grew up, getting closer and closer to a life that "wasn't leading me anywhere, surrounded by people who took advantage of my vulnerability and innocence; I was on the wrong path , that's for sure," he tells us, recalling his adolescence and youth. His first turning point in this trajectory was "a psychologist at a center where I was, who encouraged me to get my high school diploma and get my life on track."
The symptoms of these disorders don't disappear with age, so people must learn to manage them, live with them, and use the necessary tools to move forward . Dani has changed jobs many times : "I have a hard time memorizing when I'm given several orders or tasks at once, concentrating without my mind wandering, and I need an adjustment period. But if things are explained to me well, patiently, and taking these difficulties into account, I'm a good worker." However, this isn't the reality he usually encounters in the workplace , which is why Visual TEAF is helping him process his disability recognition so he can have a supported job that provides the necessary adaptations and support to function effectively.
For many years I have experienced a lack of understanding around me and have felt like a freak; and at times I have sunk, I have had anxiety, I have felt very alone.
In our conversations, one of the topics he repeats most often, and which has caused him the most concern, is his difficulty relating to others . "I've never been able to maintain a circle of friends, and even now I don't see myself fitting in with any group. I think they see me as someone who's a nuisance, who bores them by constantly seeking attention, who's tiresome..." he laments. Another area where Dani has had to make an effort is managing his finances : "Now I manage them better. I know there are people with TEAF (Early Childhood Illness) who get paid on the 1st and spend it all by the 2nd. It's been very difficult for me, because before I could spend my money in a week, but not anymore. I still waste it and it's impossible for me to save."
The importance of finding your peers
For Dani, it has been truly important to find an organization where he is understood and supported every step of the way. But not only that, sharing with people like himself and their families has allowed him to understand and accept himself, and to "live with greater inner peace ." And with the intention of also helping young people, he is now leading a mutual support group within the same organization.
“I’ve spent years falling and getting back up, seeing a lack of understanding all around me, feeling like a freak; and at times I’ve been devastated, I’ve had anxiety, I’ve felt alone,” she confesses. Knowing she has FASD has helped her, above all, to find others like herself to walk alongside, but she’s very clear that “ the important thing is for others to know what FASD is , how it can affect us, and what our needs are.” And she adds: “I have so much to offer, but I need help to bring it out.”
This testimony was made possible thanks to the TEAF Visual Foundation .
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