
Sveta is my amazing daughter. I love her so much. There is no one quite like her..... and my life is better because she is in it. Two years ago we got the official diagnosis that she has Fetal Alcohol Syndrome--- the orphanage director called it static encephalopathy. What can that possibly look like, I am sure you guys are wondering. Well, it looks different for every child because the syndrome is a spectrum of many things and each child can be affected differently. For our daughter it means asking her RSP teacher if she could have her old boots. For our daughter it means her genuinely worrying about how we would wrap up a pet hamster for her birthday. For our daughter it means her IQ being around 60. For our daughter it means her not always realizing when people are laughing at her and not with her. For our daughter it means probably never being able to tell time with a face clock. For our daughter it means hating movies and tv in general because she can not understand the plot.
Here is a wonderful piece written on Fetal Alcohol Syndrome.
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.
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.
65 inspiring thoughts:
What an insightful post. I knew about FAS, but I didn't really understand what it meant for somebody who has it.
This is a really good explanation. I have a friend who also adopting two kids from Estonia. They are going for court in a few weeks. Both boys have fas. The end of your post got me to thinking. My youngest had what we thought was colic. I was told I could have a glass of wine each night and then nurse her after and she would sleep better. I never did that, but I wonder what some moms overseas are told. Many receive no prenatal care at all, so maybe they really do not know just how bad it can be.
Aw Christine, this post makes me love her even more. Thanks for sharing it. I wonder how common this is, do you know?
thanks for this post, I have heard the term fas alot but didn't really know the symptoms. My daughter seems to have alot of these symptoms. I think I will research it further......themommie
Wow, what a great explanation. This honestly tugged at my heart for all the right reasons. I love to gain new insight and to be more understanding to something I don't know much about. Thank you so much for sharing!
Oh Christine! I had no idea this is what FAS did to a child. I knew it affected them. She is so precious! Thank you for sharing this! She is one beautiful daughter!
I'm so sorry you got so many hurtful comments from a previous blog. I'd read 1 or 2 and was wondering what motivates people to say those things. I think it has become "cool" to have a bad attitude in some circles.
Also, my hubby (Mr Sunshine) is special needs teacher and over the years, he's had many students with FAS. It breaks my heart because it is so preventable. As tiny babies they started off at conception with so much potential. I wish God would bless them all with families like yours.
I'm thinking one of my missions in life is to keep bringing awareness to the invisible disabilities and problems.
It's so hard because so many people judge first on the outside, so if they don't see a wheel chair or the face of a person with downs syndrome they assume the person must be "normal".
Having a invisible disability myself just makes me that much aware to the assumptions everyone makes.
Thank you for posting about FAS, that explained it well.
Faye
God Bless Sveta, she´s gorgeous and I know your family will help her find her way in life.
Renia
♥ She's adorable! What a blessing that she has you guys as her family to help her along the way!
wonderful article. what a struggle these kids face daily.
Thanks for posting this! Hopefully it makes at least a few people re-think the labels they give some children of "the naughty kid" there is a good chance the child can't help it. So many are undiagnosed, and are not understood even in their own families.
I've been half out of the blog world for a few days, reading but unable to leave comments. I so badly wanted to just write "it's your blog Christine, so blog your way" I am sorry people have hurt you. There are things I would like to say to address them but it seems that only fuels their fire... Keep blogging what's on your heart!
Very insightful. Thanks for posting that. Sveta is a beautiful girl and I think it's such a blessing she has you all for family.
What a beautiful, honest post. Your right, I never realized the what could happen to our children if they were subjected to that. I was lucky enough to stay strong through God and not want to hurt my body or my unborn.
She is a very lovely child and I hope that she never has to endure a hardship with others.
Sadly, you are describing all three of my children. From my point of view, I have to remember why they do the things they do. It's too easy to get mad with them and their bahavior when you forget the reason behind it. Thank you for reminding me
Thank you for posting this. It explained FAS in a way that I had not heard before. Very insightful.
Jill
I have a "Sveta" too and she is the light of my life!! Everyday she makes me laugh :) Thanks for the post.
Thanks for a great post Christine.
We too have a daughter with alcohol and drug exposure, and we see signs of damage.
I was wondering if research has been comleted on men who are alcoholics or drunk at time of conception. I had read on FRUA a while back that there was a problem with malshaped sperm in alcoholic men. (I think the study was on men who procreated and were alcoholics and their wives were non drinkers)
My Emma is Dx as possible FAS/FAE she has the facial features, Emma is almost 3, we will wait to see what happens. I love how it was explained in the letter on your blog.
keep up the good work
Kimberley
Well said. My Jasmine has some slight effects from drugs and possibly alcohol. But she is our joy and song.
aaaaahhhhh. this is fab!! i am sad that i have to explain to people sometimes...FAS is more common than people think...and i've seen it in foster kids and it often gets overlooked as a behavior problem. sad. great article!
Thank you for the post/explanation. I knew what FAS was but just in a very general way.
Your Sveta is such a lovely girl and so fortunate to have you and John as her parents and part of your loving family. May she bloom as the years go by.
How tragic that this can be prevented with prenatal knowledge.
I imagine that an invisible disablility like FAS is quite difficult to live with. Thanks for the explanation. Now I understand better.
Sveta, is precious!
I love your blog and enjoy reading about your wonderful family! Sorry to hear you had some nasty comments, but I'm so happy you didn't go private...I would have a hard time keeping up :)
I only have about 40 or so readers and get very little traffic on my blog so I've only had a couple of weird comments...yet they still cut.
My point is I know you love your family very much and I can tell from your post, and I'm sure God is very pleased !!! Keep up the awesome post!
Thank you for this information. You are an inspiration. Blessings to you and your family.
Thank you Christine. I read this to my husband and we both cried. We are going to print it off and put it somewhere as a reminder for us.
Thanks for education us on this subject. God matched you guys with her for a reason. I wonder if you read that every day as a reminder to continue to have grace and mercy on your family.
Christine,
Before going to get Alex, my experience was first hand with my best friends adopted sister. She was tiny, CUTE, and was go go go ALL the time. As she entered puberty, things started spiraling out of control and she has landed herself into a group home because she needs 24 hour care so that she won't hurt herself. It has tore my heart out see her abuse herself over and over, especially when she was NEVER like that before she was a teenager (she swallowed a box of thumb tacks at one point for attention).
Now back to the orphanage - there were SO MANY children with FAS there and so they were in the background of Alex's pictures that I posted on our blog. I have had families ask about them and I am terrified to say too much.
I know in my heart they are God's children too but it scares me that most of the couples asking have no children yet. Children with FAS are cute and affectionate but how do you point out that their actions won't always be cute and that child could be harmful to their children and marriage?
I know that ANY child is difficult but PLEASE tell me how to advocate for all children but yet have peace that the parents know what they may potentially be getting into?
You can delete this if you would like - it was just a question for you and I don't want to offend anyone.
Thanks,
Mandy RR
Christine, I usually link to your posts when I want to share them. I hope you don't mind that I just copied the article and pasted it to my blog. I don't want to risk that someone won't click over and read it. I gave you credit, though. Is this ok?
Wow. I'm in tears. To know that in a few months, we will be dealing with all of this for the rest of our lives is hard to swallow. But to know that WE have been given this chance to see the greater things that our future daughter has to offer is yet to be unseen is AMAZING. I'm sure this is a chanllenge and I'm sure this isn't going to be easy, but ya know what, life never is. She didn't ask be this way, and it isn't anyones fault. She's going to be here, in our arms, to love, show right from wrong, and I can only hope that I'm half a good of mom to our precious Daisy as you are to Sveta.
Thank you for sharing. I hope you don't mind, but I'm goingo to borrow this post and save it for later... once Daisy is home.
This is amazing - thank you so much for posting this essay. I learned a lot.
I appreciate your openness and honesty, Christine. It is refreshing and helpful!
Christine,
This was a very informative post.
I have never heard it explained like this.
I think I FINALLY get it now.
Your Sveta is adorable and seems so happy!
You really do have a great and inspirational blog.
I am so sorry some people are making you out to be a villain.
I know how frustrating that must be.
~amy
Thank you for this post. Of course I had heard of FAS, but I did not know the details. Bless you all.
Thank you for sharing about FAS. We have a son adopted through foster care. He was born very early and then spent 10 months left almost totally alone in his crib/car seat. I have always attributed his delays to these issues,but now I am beginning to wonder if their might be more to it.
I enjoy your blog and I am sorry you have had to endure such mean spirited comments. I was very impressed with how you handled these comments. You are always respectful and kind!
Thank you for sharing your family!
Christine, thank you for sharing that. Having a son who is so "obviously" disabled, it was amazing to me that Sveta could have any kind of problems. I will be praying for Sveta as she grows and tries to become all she can be. I am so thankful God chose you to be her mom and that she does indeed have "friends" in all of her siblings.
Christine, I am SURE I have told you this before...BUT, I printed that article out for Nate's teachers...they JUST COULD NOT understand the depth of what his disability is...he "appears" so typical in so many ways yet there are "blips" (the word we use) in his approach to life. This article helped SOOOO very much and at 15 years he has read it and truly relates to it. HE IS A TREASURE to us! WE understand him but it is truly a blessing to have others understand him as well.
THANKS!
Thank you for a great post - I had heard of Fetal Alcohol Syndrome, but didn't really know what it all affected. Thanks for helping me understand.
May you and your family be blessed with strength and hope every day!
Hi Christine!
Thanks for the wonderful post! I printed that article up and will put it on my board.
Honestly - in many adoption circles - people only talk about the physical features of FAS and how to spot them. Rarely are the effects spoken about. Unfortunately - FAS is so common in many internation adoptions... very sad.
Thanks again for sharing!
Have a wonderful weekend!
Thanks for posting this, very interesting.
I didn't know that about Sveta! Thank you for sharing. We had one of our sons tested as he displayed a lot of the regular symptoms. He didn't have it - as checked that off the list with relief but realize that his birth mother drank and did other things during pregnancy, hence premie, etc. All God's great power to you - your cup runneth over....with blessings too!
Wow, thanks for sharing that! I have to say i've been guilty of judging the birth mothers of children with FAS, and your post has put a whole new prospective on that for me. Your daughter is adorable. And I can't believe people leaving you hateful comments... I think it was smart of you to no longer allow anonymous commenters.
Thanks for sharing this piece Christine! I may pass it along to my family. They too, think I am too "strict" with Marina, but she NEEDS firm boundaries. Maybe this will help them understand why we parent her the way we do.
Wonderful post!
I knew a girl with FAS that had absolutely no sense of time. She could tell you all about an event in her life. However, she couldn't tell you when it happened. She actually had an above normal IQ. I think it made the situation sadder. So,much lost potential.Thankfully, she was being raised by an aunt. Thanks to her Mom (terrible addict), she also had 3 younger siblings, 2 with FAS being raised by their Grandmother and a 3rd one who was a crib death. Her brother literally could not talk. All the words came out as gibberish and he didn't realize it. He had speech therapy from the age of 2 and learned to talk right. He had a normal IQ but behavior was a problem. The youngest child had vision problems and FAS. She was the most effected. BTW, the state paid to have the Mother fixed after her last child!
I love these posts on your children. They are written with such love. Keep up the great work!
I've read that piece before and loved it. The piece is so wonderfully written. Every child is special, whether they have something "wrong" with them or not. I don't know anyone personally with FAS, but do have many friends with a range of "dis"abilities. No person is exactly the same as another; we are all different and special. Thank you for posting this. Sveta is beautiful and I hope her life continues to be blessed.
Hi Christine I have been following your blog since you went to Ukraine to bring home Dennis. This is such a helpful post to those of us adopting. Thanks!
What a blessing she is to you, and you are to her!
Callie
p.s. ...gave you an award over on my blog.
Thank you so much for the information. I had always heard that one physical sign of FAS is an absence of the indenture between the upper lip and nose...does Sveta have a indenture there?
Thanks!
Interesting information concerning FAS. It is very similar to cerebral palsy which is common in very premature babies. Thanks for sharing!!
Hi Christine,
I have a question if I may. How exactly to they diagnosis FAS. Do they actually do a study or a MRI of the brain? My daughter is 2.1/2years old and she is a little slow developmentally and the doctors have told me an MRI may help us figure out why or if she may catch up. I did not know if this was something that could show up with an MRI? Thanks!
Thanks for posting this article, Christine. I have given copies to people who work with our son over the years, but I hadn't read it recently.
I have been asking God to break through to soften my heart. Thank you for your obedience in posting this...because He just did.
Great post, thanks for letting me in on FAS. I never had "looked" at it from the person with FAS point of view.
Sveta is a darling girl, you are blessed to have each other.
Thank you for this article and for sharing Sveta's story with us. I'm curious how to test for FAS. Of my two twins, one is thought to have mild Cerebral Palsy (not officially diagnosed yet) and FAS has been questioned. I don't know if one twin could get it and not the other but think it would be worthwhile testing if that is possible.
I had a friend when I was in my early 20s who had FAS. He wrote really good poetry and had very good hand writing. It wasn't like most people write, his letters were like art. He did have trouble making good choices but his parents both alcoholics and drug addicts and didn't give him guidance. Even with all that, he was very sweet and thoughtful, very creative and artistic! I still pray for him that God is present in his life!
I had been given this article when teaching an early childhood ed. class by a parent of a child with FAS. Thanks for posting it.
While still in Russia an IA doctor told us to be prepared for one of our daughters to show signs of FAS due to "mild dysmorphic facial features." We watched her like a hawk for months (years!) after we came home but now are 110% convinced that she has no ill effects due to possible prenatal exposure. Our other daughter, the one who had absolutely no physical features whatsoever, is the one we are keeping a closer eye on at this point. If there had been exposure it had to have been very mild as she is a typically developing child with just a few minor (but very manageable) questionable behaviors. We're still in the "give her time" stage due to her age at adoption, but it was good to read the article again. It is very insightful and a great hand-out for those who don't understand why someone may act the way they do. Thanks again!
I follow your blog and am always interested with what you learn about your children and other's. We adopted our daughter through a disrupted adoption, she was born in the Ukraine and on her diagnoses one of them read "static Encepalophly (sp)..No one ever said anything about FAS...we were told mild CP, post institutionalized induced Autism , microcphaly, non-verbal and she doen't feel pain...never FAS! This does answer a LOT of question's. We love our daughter and this makes no difference to our family as we also adopted our son who is FAS! Thank you for posting this, you are great mom and an inspiration!
Thanks for the post, that was really helpful. I'm so glad Sveta is part of your family.
Christine, Oh! Tears. I know a little girl who is identical to this article. She is right here in my arms as I type. I might want to copy this to my blog, if you do not mind. -Mer
Here might be a place for strength when you need it.
http://thoughtspreserved.blogspot.com/
As a mom of a child with ARND...or FAE...i found this post really well done.
FAS is so very complex..it really is hard for children to retain things.
Everyone in the universe should read that! I had a stepsister with FAS, and that essay describes her perfectly. And it often seemed like everyone... ESPECIALLY her adoptive mother... just couldn't stand her. She lived with me when she was 18 and I was about 20, and I remember on the weekends we used to get these $5 train passes and ride the trains all day, just so we could get out of the house (she didn't have a job or school, and was stuck in the apartment all day when I was at work) We would just go everywhere. She used to talk to everyone. We would wander around train depots at night and be singing outloud. This one time she wanted to go visit her friend who lived in a neighboring town. She thought she knew the way to get there, and we took the train to the town the friend lived in and we walked for hours and ended up getting lost. She didn't really know the way, although she thought for sure she did! The last thing I remember is, we missed our train to get home because we couldn't find our way back to the train depot. We were sitting on some stranger's front steps and she started crying. She said she knew everyone was right, that she was just stupid, that she couldn't do anything right, and that she was just so messed up. She was like, "I got us lost, its all my fault we're lost," and it was so sad. But everyone was always so IRRITATED by her... even me, a lot of the time. She got pregnant shortly thereafter, by a crack addict. Now its ten years later, and she is a homeless crack addict, and three of her five kids have been taken by DCFS. And I always think maybe if things were different when she was a kid, if she'd gotten adopted by someone who could understand her needs and be more tolerant of her, maybe things would have been different....
I love that, I need to borrow it for my blog. Did you see the video I put on it the other day? It is a great song you should listen to.
Christine-
Thank you for publishing that except. That is SO well written. Describes living with FAS/FAE to a perfect 10.
Thank you for sharing. Bless you and your family. Thank you for blessing others.
Cheers! -Esther
I found this site using [url=http://google.com]google.com[/url] And i want to thank you for your work. You have done really very good site. Great work, great site! Thank you!
Sorry for offtopic
Post a Comment