 
I'm theVISIBLE TEEN with the Invisible Disability
Nobody can see my disability. I look just like every other teenager. Attractive, friendly, talkative. But nobody sees my disability. They can't see how my neurons are scrambled in my brain. They can't see the misconnections between the left and right brain. They can't see the little empty spaces in my frontal lobes where brain cells were supposed to grow but didn't. Nobody can see that I have Static Encephalopathy.
But everybody can see how inappropiate my behavior can be when I am out in public. Everybody can see how immature I can be compared to other teenagers my age. No one sees the two-year old tantrum as soon as I get home when things have been too overwhelming for me. No one sees see when I get out of control at the slightest little problem at home from trying to cope when I am out.
They don't see how hard I work when I can't control my behavior? They don't see my frustration when I forget the rules, again? Can they see my anger when I am blamed for trouble over and over? They probably can see that, because I wear my feelings on the outside, I just can't keep them in all the time. But they don't see that as a disability. They say I'm unmanageable. They say I'm a problem. But I'm not a problem. I HAVE a problem. I have Static Encephalopathy.
Everybody can hear me, because I say a lot, to anyone who will listen. And I can talk a good talk. I can fool people into thinking I really understand what I'm saying. What they don't see is that I'm not as savvy as I appear to be. They don't see that my level of comprehension is way below my level of expression.
I act like I'm capable of taking care of myself. They don't notice that I have trouble managing money. Sometimes I can't even figure out the right change for the snack machine. They don't notice that I have trouble remembering what I got in trouble for yesterday. They think I should learn from my consequences. But I can't. It's not that I don't know the rules. I do. It's not that I don't understand consequences. I do. I just can't make myself do what I know I should do. I don't know why I can't. I just can't.
They don't notice that I'm a little short in the common sense department. Or do they? Some people tell me "You should know better than that." And I do know better. I just can't be better. The doctor says my lack of impulse control and poor judgment are a result of damage to my brain before birth.
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Some people say I should just grow up. They say I act half my age. The researchers say it has to do with "arrested social development" that is common in people with mental disorders caused by prenatal exposure to alcohol.
Everybody can see that I'm friendly and talkative. Some people call me a "social butterfly." But nobody can see how lonely I am. My friends don't invite me to their activities. They never ask me to visit them. They never call me when I give them my phone number. I have lots of "friends" but I don't have a best friend. Nobody can see my fear. Because I have no fear. I'm not afraid of strangers. I'm not afraid of heights. I'm not afraid of unprotected sex. I'm not afraid of the dangers of the real world. Should I be? Maybe I forget. Even when people tell me things over and over, I still forget. The psychologist says I have a problem processing information, memory deficits, attention deficit disorder, hyperactivity. Duh! Some people, including me, say my mom is over-protective. But the experts say I am vulnerable to abusing others and being abused by others in social situations. And I complain about being restricted, because my Mom doesn't let me go to the Mall or spend the night at my friend's. I guess she knows that I can't behave appropriately when I'm not properly supervisedy, and she doesn't want me to get into big trouble. My conscience doesn't seem to work right. I don't want to get into trouble. I don't want to make people mad. I don't want to be "inappropriate." I don't want to be bad. I just want to be accepted, and understood. Not blamed and shamed. I want to be appreciated for my gifts. I do have some if you look more closely. I want to be cared for as a person. I want you to care, even when I act like I don't. I want to be respected, just like you do. And I need you to role model respectful behavior for me so I can be respectful too.
And I want you to stop talking bad about my birth mom because she drank when she was pregnant with me. Maybe she couldn't stop drinking. Maybe her doctor told her it was okay to drink when she was pregnant. Maybe she couldn't control her behavior either. Maybe she just did what everybody else around her was doing. Maybe she wanted to be accepted, and went along with the crowd. Maybe she didn't think about what she was doing. I don't want to make excuses for her behavior, or for my behavior. I just want you to see. Maybe she had Static Encephalopathy too, just like me. But nobody could see.
--by Teresa Kellerman, Coordinator of the FAS Community Resource Center in Tucson, Arizona Visit our website at http://come-over.to/FASCRC rev.6/24/99 |