Monday, May 9, 2011

FAS Rears It's Head

My daughter Sveta took a five dollar bill that she earned to the baseball game. She loves to buy things at the snack bar. She doesn't understand the concept of money other than if you give it to someone selling things, you will get something back. When she younger, this wasn't such a big deal. As she has gotten older, I thought I could teach her the basics.

Yes, she can now add by carrying and subtract by borrowing, but the concept of money has not gotten any clearer. I have tried to teach her the concept of "change"-- not the correct calculation of change just when she should know that she is owed change.

She doesn't get that either.

Back to the snack bar. She went up to it to buy a Gatorade for $1.50, handed the guy a five and ran away completely oblivious that she just paid five bucks for a drink.

Forget trying to explain things to her. Trust me, I tried.

This is where I get angry. Angry that fetal alcohol syndrome could be totally prevented, angry that even if I teach her to stick around for change someone will take advantage of her, angry that I can't fix this for my daughter.

I can love her, shelter her, and help her till I am blue in the face... but what she wants is to be like her sisters.

In most ways she is. In most ways her disability is invisible.

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.


At this point, I will have to monitor her more closely and go with her... role play at home more... and just keep pressing along.

16 comments:

  1. As I read that tears slipped down my face. I try to put myself in her shoes and your, the Mommy's shoes. Oh how difficult and painful it must be at times. FAS doesn't have to happen but it did and God knew that you and John were to be her parents for her training and to give God the glory for the way you parent her and the others kids.

    Blessings to you for how you are parenting her and not giving up.

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  2. At our children museum they have where there is a pretend store and kids buy stuff and play cashier I plan to use this with my Emma, she starts kinder this year and I see it to be a long year sense school wont give her ant services at this time.

    good luck

    Kimberley

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  3. Hi! You are a good mother who wants to protective her child who needs extra help and may not have the ability to make correct choices in life. A child who is slower or a little different may also be bullied at school. Within the home schooling community in Erie County I have never heard of any child being bullied at any of their the social events.I know homeschooling can be a lot of work.Thinking of you, Pat

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  4. I didn't know that your daughter has FAS just like my Iryna does. It's a tough road to travel. (((HUGS)))

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  5. I see the same thing in my 10 year old son (FAE). He "gets" math, but the concept of what something costs is just no where in his mind.
    I have started to try "teaching" him in a different way. I work at a day program for disabled adults and we have come up with a way that seems to "work" for them. We use a cash register and play a game. Everything for them is dollar up. If it is $1.59 we ask them to dollar up which would be $2.00 so if they do get ripped off it is only a few cents intead of many dollars. We work with them on the dollars for weeks til the can count the money they are giving someone and then the change the receieve back. They seem to enjoy "playing the game" and then learning by accident !! :) We do this EVERY DAY with them......the more we work with them the more they are able to grasp the concept. One of the girls is now able to count the money with change included and has her "eyes" set on working the cash register a the Good Will store where she works....I think we will get her there.
    I started doing this with my son and while he is starting to get the money counting thing, the conept of "it costs $8 and I have a $10 so I will get back $2" just isn't there yet. But baby steps and I know it will happen....on his own terms.
    Since you homeschool...a cash register might be a great addition to your school supplies....they really do LOVE the hands on "play" !! Good Luck !!

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  6. As a mom of many effected by FASD, this is one of the things that drives me crazy. My oldest w/ FAS is 18, my youngest w/ it is 8 and then a few in between those two. FAS kids have such a hard time w/ any abstract concept. Money & time are two of the things that seem to elude them. It hurts to watch. My daughter at 18 still can not make change at a store. We are their "external brain." Always will be. Know you are doing the right thing. And never ever give up which I know you won't. What has helped some of ours is knowing they are not alone. They enjoy meeting others w/ FAS. Best wishes on this parenting journey. Though it is so difficult, it is very rewarding when you see they have grasped a certain concept.

    Stephanie

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  7. For what it's worth I have done that a bunch of times usually someone follows me or yells a me to tell me that I forgot my change in my experience most people are good and don't try to take advantage of the disabled or the forgetful.

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  8. My daughter has mild FASD and my son has more severe FASD. After 7 years, my girl has finally grasped the basic concepts of money and time and is able to apply them to the real world...most of the time. My son has no clue...he is a generous soul and is constantly trying to give me money from his allowance. Most of the time, it's when we're at the store and he wants to pay for the groceries...and he'll try to hand the cashier a fistful of pennies. No matter how many times I try to explain that pennies aren't enough, he's always surprised and disappointed. Sigh...I know exactly what you mean...hugs being sent your way!

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  9. Thanks for once againg keeping it real! You're an encouragement to me as a mom! Blessings as you raise your family!!

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  10. Wow, this sounds so much like my own son and so many of the higher-functioning children I know who have autism. I never realized how similar FAS and ASD (in certain cases) can be. As always, Christine, thank you!!

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  11. Every time I read that poem I think my daughter might have FAS. Those are the exact things we struggle with daily. She is only 4, so I am not sure if it is too soon to tell. Are a lot of these symptoms also just orphanage issues? I wish there was a way to know for sure.

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  12. I normally LOVE LOVE LOVE your blog, and I really liked the poem until I came to the part about getting to friendly with the little girl next door! It just felt wrong to me! I know a little girl who was molested by an older boy with fairly signifiant developmental delays (not FAS). He was older, she was afraid to say no. His parents tried to explain it away by saying he did not understand, but there is no excuse for what he did! She will have to live with it forever. This poem seemed to excuse the behavior, and that bothered me.
    -AJ

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  13. Hi, I love to read your blog and never have commented. My son is 3 and is home from Russia almost 2 years, and I think he had FAS, his head circumfirance (sp?) is tiny and he definetly is delayed. I find it so interesting to read your post. Is there something I can do now, besides all the help he gets.. that specializes in FAS? Keep upi your great interesting blog and the love of your family! xo

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  14. It's very sad how alcohol affects children. FAS/D is the MOST preventable disability it's heart wrenching what these children and their parents have to go through.
    If you are interested in a super read ..read Damaged Angels by Bonnie Buxton.
    I have come across many children with this disorder and it affects them all differently but the loss of time, confusion with money and having no fears seem to be consistent with all.

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  15. reminds me a little of one of my first outings alone with little G. I decided on two separate vendors for lunch and thats where it got interesting. Somehow once my food was prepared and served I walked off without paying then on to the next booth where I paid and waited, while they were serving up food vendor from first booth walked over wanting money. (I about died on the spot)I Walked over to his booth to pay and profusely apologize, back to the other booth and tried to pay again.Thankfully they stopped me only causing further horrible feelings. Just remembering the feelings of that ONE instance makes my motherly heart ache for all those with FAS.

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  16. My husband and I look to your blog for encouragement with our own adopted children. He suggested I look at what you have said about FAS yesterday when I was distressed over one of our children's behavior that was so difficult cult cor me to get a handle on. Today while researching a health issue of one of my older children I came across information on PKU and thought of your Sveta. It may be nothing, but I wonder if she has been tested for it? I would be remiss if I didn't relate this to you. I hope you don't mind. Please just disregard if it is something you have already loomed into. Thanks for sharing and helping with your reality based insight!

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I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.