Let me start by sharing about her strengths.
In all honesty Sveta is our easiest child. She really is. She will sit through church without a word, she rarely gets into arguments with her siblings, and she rarely complains that she is bored. She goes to bed when she is told and keeps her side of the bedroom neat and tidy. I never have to tell her to do her homework, and she loves to help in the kitchen. She enjoys the simplest pleasures--- a walk around the block, watching the dog get a new haircut, eating a Popsicle outside, taking a bath in Mama's big tub, running to the store with me for milk, and getting to swim at night. It doesn't take much to please Sveta unlike my other children who often think that John and I were born to entertain them.
I believe that she is very well behaved because she doesn't understand what is going on around her. We have asked her what she learned at church or school or Wednesday night youth group on different occasions and her answer is usually always a very quiet, "I don't know." She knows that she should be able to answer something but really doesn't know how, but wants to appear like she knows so she behaves perfectly--- making her disappear. She has learned that if she behaves quietly and without drawing attention to herself she can get by in almost all social situations. We believe that this is her way with coping with her disability and avoiding being asked to participate. And if you didn't know Sveta, her disability would look invisible to you.
Once Sveta is out of a formal social setting she will let her hair down and relax. As long as she knows the people around her like close family and friends, she will be more social. Sometimes too social. While I know in my heart that she doesn't mean to get on people's nerves she often does so by getting too close, asking inappropriate questions, talking too loudly, and acting too crazy. Often times, we have to ask Sveta to go play with the kids because she hovers around listening to the adults. Almost everytime we ask her to go play with her sisters or guests that are visiting our home, she gets grumpy. This is her biggest behavior issue.
Grumpiness.
Almost ever single time we ask Sveta to do something that she at that moment doesn't want to do, she gets grumpy about it, meaning that her face immediately looks like we just asked her to eat a can of pickled worm guts. Her body pulls away as she tries to turn around and ignore us. So we have to ask her again. Often times she will sass by saying something like, "I don't have to," under her breath or, "I'm not going to listen to you." It is a fifty-fifty chance that she will do as she is told in situations like these and often times she chooses a timeout in her bed rather than her changing her behavior and getting ungrumpy. That is because she has a very stubborn streak too. Just the other day in church as we were filing in to sit down for the service I pointed for Sveta to sit next to one of her siblings. Well, I guess I ruined her plans because she copped an attitude with that grumpy stand-offish, arms crossed stance.
We have explained that when she does this her behavior is disrespectful and embarrassing to us and any other adult who asks her to do something. I have related it to her level by responding to her in the same way when she has asked me something. She doesn't like that, but boy does it get my point across--- but only for that day. By the next day she has either forgotten or is too stubborn to work on not being grumpy. Or perhaps, I am beginning to think that she can't help herself and this is the way my Sveta is going to grow up to be. That is something that John and I have to accept but that doesn't mean that we will allow her to behave that way without consequences. She may very well spend alot of her teen years close to home and her bedroom if she can't learn to quickly pull herself out of her grumpiness. It is one thing to react a certain way, but I do think that Sveta has the capacity to humble herself and quickly apologize for her grumpiness.
Another thing is that she is very competitive but doesn't understand that bragging that she is the best at something is also inappropriate. To argue with a classmate that she is the best math student just because she happened to finish her math fact sheet first does not sit well with those students. Sveta often times continues with her know it all attitude and has ended up calling someone dumb or stupid. This doesn't happen very often, but when it does she is unaware how angry she has made that kid who thinks that Sveta is one to talk. I know this sounds petty, but Sveta has said some rude things to kids that have made them want to hit her. I wonder how this is going to look in junior high and high school. Again, FAS is more of an invisible disability where students will not be willing to give her a break as often as they would to someone with an obvious disability.
Another thing is that Sveta is very strong. And when she is in trouble and I insist that she look at me, I have had her claw me when I've grabbed her hands to pull them down away from her face. Eye contact is something that we have insisted on day one with all of our children and Sveta is smart enough to know that this is one area that she can disobey and have complete control over. This behavior is outright disobedience and gets early bedtime for a few days because it is babyish behavior to not respect your parent enough to give them eye contact and when children act like a baby they go to bed early like a baby. Plain and simple.
So yes in response to emails and comments, Sveta can be bossy, impulsive, physical, loud, grumpy, and disrespectful. We just have to stay totally on top of things and very very consistent. Recently, we had an episode in the morning where she was very grumpy because I asked her to go change her shoes and socks. She got very loud and cried in a tantrum like way and even said that she should just run away because she doesn't like me. I showed her the door and let her know that I would be notifying her school and the police if she wanted to run away but if she wasn't going to, she better just be quiet. I let her know that if she left she would never find another family who would love her more than we do. And I asked her if she was sure that she knew where she would sleep, take a warm bath, eat yummy spaghetti, or sleep under a pretty cozy comforter. She opted to stay put and apologized for threatening to run away but still let me know that she did not like me.
Deal.
At that moment, I didn't like her very much either.
Good thing I loved her.
19 inspiring thoughts:
As I've said before, you are a saint.
great post. in all honesty it makes me wonder how many times i might have come across someone with FAS and never known. the strange thing is that in a sense i have an "invisible disability" without having a disability - it's called abuse & mental illness. after 11 years of abuse, finishing off with a month in mexico after being kidnapped, i reacted to people VERY strangely and didn't understand appropriate reactions at times. my Mom is AMAZING and she always loved us & we knew it... but when your other parent is saying those things & acting on them, you wonder... and nobody saying anything different will make you feel better until you're old enough to understand how wrong that one parent is. i'm not saying i've got it as bad as Sveta, just that i understand to a small extent what it's like to KNOW something's not right, as with my mental illness i had a hard time thinking rationally or reacting rationally - it was in extremes, although i wasn't bipolar (it's really hard to explain, it's complicated by the abuse factors).
praying for all of you!
- michelle
Thanks for the insight on FAS.
Cxx
I love your honesty Christine! Some days I dont like my kids much either..and like you said its a good thing we love them! :)
Christine,
Thank you so much for writing about FAS. I appreciate your honesty and your perspective so much. I've read so much lately other places that I was honestly ready to quit reading and face whatever is ahead for Emma on my own and figure it out on my own.
We don't have a diagnosis on Emma yet, other than Myrocephaly, but we suspect FAS.
Anyway, I just want you to know I"m reading and listening.
How old was Sveta when you adopted? When did you get a clear diagnosis? or did you always know?
(tracieloux@gmail.com)
Thanks for sharing, Christine! I think it's very important for people to understand that FAS isn't juts a low IQ, and that there is a lot more to it if they're considering adopting a child with FAS. My brother has blessed my family beyond words and has presented challenges like all of us kids have, but I would want people to understand what they are taking on, something that we did not know when we adopted him at birth.
Jasmine
(Sister of eleven, including five who were are adopted, and six with special needs.)
Good post Christine..as always very positive.
My son is diagnosed with ARND...he displays..well..you've read about him...
Each and every child is different..just as you said..but FAS truly is an invisable disability..and it's preventable!
I, too deal with all these issues with my kids. My kids also don't really get when people are teasing them, either. They don't understand that how they are acting isn't socially appropriate and if they want to make friends with people, they can't brag or grump or be hyper or inappropriate or whatever.
I think the hardest part is the invisibility of it. It still makes me cringe when people who only see my kids from a distance gush over how well my kids are doing. Yes, they ARE making significant progress...but there is so much more that they never see. Consequently, when they do see us disciplining our kids in ways that they need, I'm either accuesed of being to hard on them or they, the observers try to minimize what they don't see as "normal kid behavior" and "their kids do it too." It drives me crazy!!
Yup, there are plenty of times we don't like them...it's a good thing we always love them!
Im also curious how Sveta was identified as having FAS- was it known information that her birthmother drank during the pregnancy? She doesnt have the facial characteristics of FAS, but I know there is a range in that presentation. My sister has very similar issues- same IQ, delays, social behavior in many ways, but does not have FAS. Goodness, I do remember how she would show off and insist that she was the best in something! I think she lacked awareness of her own abilities- and I think she wanted to feel "important".
thanks for that realistic post on FAS.
Christine, I'm so glad that you expect things from Sveta and hold her responsible for her actions. I've seen people who just make excuses for their children with special needs, when their parents don't expect anything from them they don't expect anything from themselves. She may never thank you for it but she'll go much further than if she just learned to make excuses. Tracy
Great post. In your experience do you think Sveta will ever be able to live independently? What I mean by that is have her own apartment and own job or do you think she will live at home with you.
I have one that may spend all of his teen years in his room and he has no excuse or explanation. He has a diagnosis of conduct disorder which only he can correct.
It sounds like you are right on top of things. I wonder if sometimes you just get emotionally drained.
Thanks for this post. One of our children was just diagnosed with FAS so reading this really helped me.
Wow! Good info and good post. Thanks. This is so uplifting and I loved learning more about Sveta. My Grady controls his eyes and won't give eye contact, and Liera has the grumpiness syndrome, too! All kids have their issues, you are right! God bless, Jen
Wow, you have almost described O to a T. I also get the Evil eye at times from her. Does Sveta do that too? If looks could kill, I would have been dead. She is stubborn to a fault, but an angel in school. So the teachers dont understand why she is there. She never learns from consequence. Part of forgetting concepts and rules that she once had down. Ugh, it is the invisible, yet most annoying disease.
Great post! I have a child with an "invisible" disability as well. It's an interesting and hard thing sometimes.
Eye contact is very difficult. We require "stomach or shoulder" contact. As in, "I am speaking to you, _______. I need you to look at my shoulder or my stomach so that I know you are listening."
I have heard it told by adults with autism that if they have to make eye contact when listening, they literally cannot hear. My child describes it as his ears "turn off". Not in a sassy way but rather in a "I can't hear, why?" way.
Do you find that true for children with FAS?
We have a boy with FA???...let's just call them issues. He hasn't been officially diagnosed with anything.
I recognized some of the same behavior traits that you mentioned. The exception (so far) is that he doesn't have much temper AT ALL! But he does do the grumpy thing under those same type of circumstances and WHINES! Ugh!
Anyway, he is our most loving and patient child. Especially sweet with the little ones.
Anyway, I understand where you are coming from! And you mentioned ways she has learned to cope. I figure that if they can learn to cope then there must be ways that can be learned to help them cope with comprehension and compliance and such. I just need to keep looking!
Our biggest challenge with our son is teaching him to be pro-active instead of reactive. For instance, if I ask him to find me a brush he will whine, "But I don't know where it is!" It honestly doesn't occur to him to LOOK for it! If I send him to his room to think about what he should do, he can come up with that solution but it takes a long time. And I don't think it is defiance, either.
Still trying to figure all this out. :-)
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