FAS

Christine did a great post last week on her daughter, Sveta, who has FAS. She included the following piece, one I had not read before. I love the title, because so often, when I speak of Marina's special needs, people look at me as though I'm crazy. Even if they don't say it--and they often do--I can read it in their faces, "But she looks perfectly normal." Though we have not had a professional diagnosis of FAS on Marina, since her adoption, we have done our own personal research and feel confident that FAS is the basis for most of her lingering issues. This was confirmed for us last summer as we visited with the specialists in the International Adoption Clinic of Texas Children's Hospital in Houston. We were there for Cara's medical needs, and were discussing what we could reasonably hope for Cara's development in light of her massive exposure throughout gestation to cocaine, and meth. The news for Cara is very hopeful. Because alcohol detracts from the effect of these drugs, users seldom drink. Alcohol takes away their high. Not true for heroin addicts. Alcohol increases the effect of the drug and users regularly take them in tandem. Also, they rely on alcohol to "get by" when heroin is not available. Marina's birthmother was a heroin addict. Please notice that the drug of most concern here for both of our daughters is alcohol--not crack, not meth, not heroin--this legal drug is BY FAR the most devastating to the unborn child. I've included my notes in pink. Recently, experts have changed the name of the disorder from Fetal Alcohol Syndrome, to Fetal Alchohol Spectrum, because they are learning that children can fall in a wide spectrum of symptoms and issues as a result of their exposure. This is certainly true for Marina.

********
The Visible Kidwith theInvisible 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. Marina only has trouble with this when she has had too little sleep (which for her means less that 12 hours in a 24 hour period) or entirely too much stimulation. If she is out of her routine we also see this behaviour. 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. These would be Marina's melt downs. Praise the Lord, we have very few of these now. A stranger looking in would see a "brat" throwing a tantrum and would think, "those parents need to discipline that child more." But nothing could be farther from the truth! Marina--when she is who she is--has a tender and sweet spirit and has the strictest of parents. Her meltdowns resemble epileptic fits more than they do your typical toddler tantrum. 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. Only just recently have I noticed this. It took Marina a long time to talk, and we were so happy when she finally did, we never would have thought to complain about it. But last week it hit me, "She is talking non-stop and she isn't even SAYING anything. When I looked up at the clock it was 30 minutes past her nap time. 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. Marina does not usually exhibit this. When I catch her at something, or even just SUSPECT she is to blame for something, she tells the truth. This is a great relief. 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. This part makes me cry for my child. It is so true. She can't remember. Sometimes, if she has not slept, she cannot remember her own name. 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. Marina is actually very mature for her age in many ways. I don't see that she exhibits this, but I've tried to prepare myself for the possibility that she may get "stuck" in a later stage of development. Everybody can see that I'm friendly and affectionate. Marina is not--and has never been--overly affectionate with strangers. Unless they have something she wants, and then it's like a kiddie version of "Fatal Attraction." 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. Marina is too young to have a best friend, so I'm unsure about this. I think growing up in a large family will help her. There is a lot of give and take, conflict resolution, and sharing in a large family. She was able to do well with friendships in the daycare. There are times when her responses to friends and siblings is startling and disturbing, but such interactions are rare. An example of this was the day she reached out and slapped a new classmate (TOTALLY out of character for her) at school. She was crushed and truly surprised when she had to pull a card for this. After trying unsuccessfully to get to the bottom of the incident, she was finally able to verbalize (YEAH!!!) her motive. She wanted to know his name and he wouldn't talk to her. It floored me that she thought that knocking the boy on the head was a good way to win friends and influence people! 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. When I am not there, Marina typically bounces off the walls. The last time she went "bonkers" in church when I got up to take Randy on a potty break. This is the kid that I NEVER have to correct or remind to get quiet in church. She is always as docile and still as the proverbial church mouse. Afterwards, I asked her what on earth could have possessed her to behave that way. "Why did you act like that, when I got up?" She said, "I had to." "WHAT?! You HAD to? Why did you HAVE to?" Her response was very telling, "You weren't there." 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.

*****

One thing I do want to add, though, is that it DOES get better. No, we can't undo the brain damage. But we're learning every day new ways of coping and helping her form connections. Connections that most of our brains formed naturally during the first year of life (you know, that year Marina was in an institution). It's hard work for her, but she is learning. Some days it seems so slow. Some days I've despaired of her ever living independently (when I've had to remind her that her name is Marina). I've despaired of her staying out of the state penitentiary(when I've caught her for the 100th time stealing and gone over, yet again, that stealing is wrong. But for her, it was the FIRST time). I've despaired of her living to adulthood (when I've reminded the kids to stick close to me, and in response, she's run out into a busy parking lot). But I'm hopeful. Last night, we were visiting at the master's sister's church. When we got out of the van, Marina's cousin bouced up and said, "C'mon Marina! I'll show you where to go." I was opening my mouth to tell her "no," when Marina answered, "No. I need to stay with my mommy." This was a wonderful way for Marina to reply! It reflects INDEPENDENT THOUGHT (not going along with peer pressure) and SELF-PRESERVATION (staying with the adult is smart and safe) and ATTACHMENT (mommy will take care of me). These are qualities we have labored long and hard to cultivate in Marina, and now we are seeing the fruit. How I praised her for that answer!
One thing is certain--no, two things I know. Marina is a survivor, and God has a plan for her life.