The Visible Kid with the Invisible Disability© 2003 Teresa Kellerman
Hey, look at me! Do you think I'm cute? On the outside, I look just like any other kid - friendly, playful, and full of energy. But there's something about me on the inside that you can't see - how my brain was messed up before birth by alcohol. You can't see the tangled connections and all the little empty spaces in my brain. Unless you can see inside my head, you can't see that I have - what's it called? Static En-ceph-al-o-pathy.
But what you can see is how silly I act when I am out in public. You can see how immature I am, especially when you compare me with other kids my age. And you always notice when I get out of control and "lose it" when things get to be too much for me to handle.
Can you see how embarrassed I get when I can't control my behavior? And how frustrated I get when I forget the rules - again? And my anger when I get blamed for trouble over and over? You probably can, because you can see my feelings plastered all over my face.
You say I'm a problem. But I'm not a problem. I have a problem. I have Static Encephalopathy. The doctor told me what that means - my brain damage won't get any worse, but it won't get any better either. It's forever.
You can always hear me, because I talk a lot, to anyone who will listen. When you ask me a question, an answer just pops out, whether it's true or not. I'm good at telling you what you want to hear. I can fool people into thinking I really understand what they are telling me. I don't want anyone to think I'm stupid.
I also act like I can take care of myself. But it's hard for me to figure out time and money. I can't even make change for a dollar. I can't remember what I got in trouble for yesterday. You probably think I should learn from my mistakes. 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 just can't.
Maybe you notice that I don't have a lot of common sense. I'm the one who goes along with the wrong crowd, who gets sucked into doing some really stupid things. And I'm the one who usually gets caught.
My teacher always tells me, "You should know better than that!" And I do know better. I just can't be better. The doctor says it has to do with "lack of impulse control and poor judgment" are from damage to my brain before I was born.
My Dad says, "Just grow up." He says I act half my age. The researchers say "arrested social development" is common in kids like me who are alcohol affected. That means the only thing that will grow up will be my body.Everybody can see that I'm friendly and affectionate. But nobody can see how lonely I am. I have lots of "friends" but they never come over or call me. I don't have a best friend. But I pretend like I do. I wish I had a dog.I'm not afraid of anything or anybody.
I'm not afraid of strangers, or of heights, or of unsafe 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, that I have memory deficits and attention deficit disorder and hyperactivity. Yep, that's me all right!
You probably think my mom is over-protective. But she knows how easy it is for others to take advantage of me. Sometimes I think my mom is too strict, because she doesn't let me go to the park by myself or spend the night at my cousin's. I guess she knows that I can't behave properly unless she's right by my side, and she doesn't want me to get into big trouble. Like last year when I got too "friendly" with the little girl next door. I didn't know that was "inappropriate." (I hate that word.) Mom said I could get arrested for doing something like that, which really scared me. But my conscience doesn't seem to work right. 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 the good things. Do you notice those?
I want you to care, even when I act like I don't. I want to be respected. And I need you to be a good role model for me so I can learn to be respectful too.
And most of all I don't want you to say bad things about my birth mom because she drank when she was pregnant. Maybe she couldn't stop drinking. Maybe her doctor told her it was okay to drink when she was pregnant. Maybe she just did what everybody else was doing. I'm not making excuses for her behavior, or for mine. Maybe she didn't think about what she was doing. Maybe she had Static Encephalopathy too, just like me. But nobody could see.
We live with this everyday ! It is tough for the child and for the rest of the family..You feel like you beat your head off the wall everyday ,trying to teach them money and time.. You just think they have gotten it and guess what it's gone..
FAS/FAE, somedays we wish we could say good bye to you ..But you will be with us forever..