I was born with fetal alcohol syndrome. I was also born mostly deaf as one of the side effects. I went through many years of speech therapy and had many ear surgeries that went terribly wrong. I had to deal with many health problems while growing up. Despite of that, that wasn’t the hard part – being born with FASD, that is.
It’s growing up with FASD. It’s trying to make friends. It’s following orders. It’s the little tasks in everyday life. A simple phone call can put me upside down. Will the receiver be able to understand me when I talk? Will I understand them? Will I comprehend the tasks they want me to do?
It’s nerve-wracking when you can’t seem to function at the job interviews. It’s nerve-wracking when you’re told to do multiple tasks when the first one already leaves you anxious and confused. I’m always anxious. I’m anxious to do laundry in a public space, and I fall apart when the machines don’t work simply because my brain can’t function how to deal with the situation. What do you mean I have to call a number? What do I even say? They don’t even understand me!
“But you look normal to me.”
Not all disabilities is physical. When you can’t put into words what you’re feeling. It’s not laziness. It’s hard to explain to somebody who doesn’t have FASD when you’re the one who has it because it basically just leaves two very confused people even more confused than before. How am I supposed to explain this? I will try, is all.
I graduated Cosmetology with straight A’s. I was always on time and did all my work ahead of time. Yes, I graduated a month earlier than I’m supposed to. Did you know at least 90% of my classmates quit let alone don’t even graduate? Sure, people look at me weird when I’m always asking questions and still somehow managed to be confused ALL THE TIME. It doesn’t get easier.
I’m discipline. I wake up to run. I do what I can to start my goals if I managed to start them at all, even if I am not always on point. The thing is, I don’t know how to expand beyond that. I can’t begin to comprehend how to get to be B from A. I’m already confused with A in the first place, so it is a bit ignorant to tell somebody with FASD to get proof on the disability when other person is, duh, the one with the disability. It’s like telling somebody with ADHD to just “chill out.” It doesn’t solve anything.
The best way I can explain what it’s like growing up with FASD is that I feel abandoned every single day of my life. I can’t seem to catch up, and it is frustrating when somebody who is 10 steps ahead of you tells you to sprint, so to speak.
I mean, I have asthma, but that’s another story.
It wont get better. It wont get easier. I can’t stress that enough. I will never understand, and I certainly will never catch up but I can improve and learn more. I can adjust. I guess what I am trying to say is that the people around you may not seem to have disabilities that are seen in the naked eye, but it doesn’t mean they don’t have them. It is scary because that is when we don’t get the proper help we desperately need. I don’t want hand outs. I just want and need HELP.
Statics show that many people with FASD don’t live beyond 35 years old. Well, I will be 35 this Sunday. I guess you can say that is a celebration in itself.