For a solid month Anya played her heart out here. She thoroughly enjoyed the new people, the new toys, and the house with all kinds of rooms to explore. Leaving the house was a source of distress for her so we tried to keep that to a minimum, but still slowly get her acclimated to being in public. Since the month mark Anya has decided that the novelty of all of this has worn off. She has suddenly decided that the toys here are boring, the rooms have been explored to the extent that we will let her explore them, and going out in public is a fun new adventure now that she's convinced no one is going to take her and run. Because of this Anya spends a good part of her day following us around and asking to eat or go bye bye CONSTANTLY. How is it that a child who lived 5 years of her life in a room the size of my bedroom with hardly anything to play with can decide in a month that she must be thoroughly entertained at all times or life is boring?! As I type this she is standing at the table staring at Evan while he is eating lunch hoping to get some...she JUST ate a very good lunch....and then every 15 seconds or so she turns to me and asks to go bye bye. She does this by blowing kisses. I finally just started blowing them back at her because I've made it clear that we are not going bye bye right now.
When Oksana came home there were a couple of things I could do if I needed to entertain her for a good period of time. Any water play would thrill her for a long time and she was amazing at not making a huge mess. She'd also watch one short video (that is still her attention span for tv) if I really needed down time like when I needed to cook dinner. Those things saved us. It's different with Anya. If I give her water she will create Noah's flood in my house. TV does not interest her unless we are all sitting right there watching it with her and even then she'd prefer not. I've tried shaving cream (not real thrilled with that since she started at it and whined the whole time :), a rice box (imagine Noah's flood but with rice....and that was supervised!), play doh (now she did like this but only for a little while), reading books (still not a big book kid but getting a bit better), and singing songs (this will entertain her endlessly so if you want to sing The Wheels on the Bus 10 Million times in a row come on over!). On the other hand if you leave the bathroom door open she will entertain herself endlessly until you find her with toothpaste all over her face.....but I wouldn't know that from experience ;).
I'm really a loss of what to do with this kid! I still have to homeschool my boys during the day so I can't just run around entertaining her. I'd love to know if anyone has any ideas for a 5 year old with DS, developmentally much closer to 18 months, who spent the 5 years she has been alive in an orphanage, is non-verbal, is a rascal, and doesn't have much English yet!
Sunday, November 25, 2012
Saturday, November 17, 2012
Just a kiss?
Do your kids kiss you? I bet they do. My boys did at one time. Now they are way too cool for that so all I get is a cheek if I'm lucky, but they look forward with anticipation to the time each night when Larry and I wrestle them to the ground and kiss them before bed :). I think kissing is something we sometimes take for granted as parents. Oksana has NEVER willingly kissed us. Some combination of being raised in an institution, RAD, and/or being on the autism spectrum has made this something she is not willing/able to do. If we ask for it she will, with some resistance, and by that I mean she will get her face somewhat close to ours and make the noise. She thinks it is fun to have us hold the boys down while she "kisses" them the same way because little sister kisses are, after all, a form of torture! Still, this has always been when prompted. She has never given a kiss to anyone in this family out of her own desire to do it.
Yesterday something pretty astounding happened in our house. Oksana was sitting in her chair for dinner and Anya was trying to push the chair in for her. I was standing in the kitchen watching, to make sure Anya's motives were pure ;), and this is what I heard Oksana say: "Oh are you helping me? You are such a sweet sister." and then I witnessed her lean in and give her a kiss!!! Now, of course her lips didn't even touch her. It was one of those get your face close and make a sound kisses but it was a KISS....a willingly given kiss to another human being!!! We were shocked.
All evening I thought back on some of those months between May when we met Anya and October when she came home. I was full of fear. Oksana's reaction to us going to Bulgaria was nothing short of extreme. She had almost reverted to some of her early days in her behavior. Add that to the discovery that Anya was a hitter and I really thought this was going to be a recipe for disaster. I prayed A LOT in those months for the relationship between the girls and for Oksana's adjustment. I wasn't shy about asking anyone I could to pray along with me! My motto was "expect the worst and hope for the best". I remember saying to Larry one day "I hope that sometime in the future I can say that having a sister was good for Oksana." Yesterday that hope became reality. Our prayers have truly been answered. Does that mean everything is perfect. Of course not! But what a special gift that the first person to get a kiss from Oksana was her sister.
Yesterday something pretty astounding happened in our house. Oksana was sitting in her chair for dinner and Anya was trying to push the chair in for her. I was standing in the kitchen watching, to make sure Anya's motives were pure ;), and this is what I heard Oksana say: "Oh are you helping me? You are such a sweet sister." and then I witnessed her lean in and give her a kiss!!! Now, of course her lips didn't even touch her. It was one of those get your face close and make a sound kisses but it was a KISS....a willingly given kiss to another human being!!! We were shocked.
All evening I thought back on some of those months between May when we met Anya and October when she came home. I was full of fear. Oksana's reaction to us going to Bulgaria was nothing short of extreme. She had almost reverted to some of her early days in her behavior. Add that to the discovery that Anya was a hitter and I really thought this was going to be a recipe for disaster. I prayed A LOT in those months for the relationship between the girls and for Oksana's adjustment. I wasn't shy about asking anyone I could to pray along with me! My motto was "expect the worst and hope for the best". I remember saying to Larry one day "I hope that sometime in the future I can say that having a sister was good for Oksana." Yesterday that hope became reality. Our prayers have truly been answered. Does that mean everything is perfect. Of course not! But what a special gift that the first person to get a kiss from Oksana was her sister.
Tuesday, November 13, 2012
Bullet Points on Anya
There is so much I want to write, but time is an issue this week so you are getting bullet points!
- Anya has been very busy at doctors lately. The big news is that "Surprise" she had heart surgery in Bulgaria. This astounds me because the medical records we got were very thorough but...whoops...they forgot to mention that she had heart surgery. How that happens we don't know, but welcome to international adoption. We first suspected it the first night she was home and we discovered a scar on her side that looked a whole lot like a chest surgery yet we had no record of that. Cardiology confirmed it and the good news is that they closed one hole, the other closed on its own, and she has a NORMAL heart and has been cleared from cardiology!!!
- In other news after numerous tubes worth of blood work we learned that it is quite likely that she has Celiac disease. Her celiac panel came back over 100....average is 4!!!! She sees GI at the end of this month to confirm but the nurse said with numbers like that we should be ready to make her gluten free....not quite yet though in case they do decide to do an upper endoscopy to confirm.
- Anya will also go to a Down Syndrome clinic at the end of the month and do a whole bunch of stuff there including neck x-rays (standard for kids with DS), a hearing test, etc. all in one stop shopping ;). This is similar to what we do with Oksana at the CP clinic at Shriners.
- She is continuing to do AMAZING. She is a rascal for sure but she is understanding more and more. She has earned her food back at the dinner table and is doing fabulous. She now signs "more", "eat", "drink", "swing", "book", "carrot", "shoes", "dog", "grapes", "help"....hmmmm...I think that might be it. She still struggles to pull out the right sign when needed so sometimes we get "grapes" for "shoes" :) but she is coming along nicely in her communication. I had a video of her signs but it is sideways so I have to see if I can get another one.
- I blogged quite awhile ago about her name change and at that time I couldn't share her given name. Now I can! Her name was Yoanna. We really did intend to keep it but after seeing the responses on people's faces when we'd tell them I kept wanting to say "I didn't name her!". I knew we couldn't spend the rest of her life doing that so we decided on an adapted version of it that became Anya!
- Anya eats incredibly well. Her favorite food is probably blue corn tortilla chips! If she sees the cabinet open that they are held in (yes, it does have a childproof lock), she will be there in a split second. She also loves fruit of all kinds, she eats veggies like they are candy....oh and she loves candy too! Going gluten free won't be as hard on her as it would be on the other 3.
- If Anya ends up in time out the number one reason will be for hitting or scratching her siblings. The number 2 reason will be for direct disobedience...with a smile on her face...did I mention she's a rascal?
- And finally, this one has nothing to do with Anya, but I'm so excited I had to share. We had a staffing with Oksana's IEP team today about her visit with the psychiatrist and it was so encouraging. They all reported great strides in behavior, ability to transition, etc. since the increase in Risperdal. And this, my friends, is proof that for some people the right meds provide quality of life. I pray that this is the beginning of great things for our Ukrainian princess!
I'll leave you with a fun picture of our Bulgarian Beauty! This is from our family photos that we just had done this weekend. To get her to smile we just had to sign "carrot" :)! For some reason she thinks that is the funniest sign! To see more check out the side of my blog :).
-
- Anya has been very busy at doctors lately. The big news is that "Surprise" she had heart surgery in Bulgaria. This astounds me because the medical records we got were very thorough but...whoops...they forgot to mention that she had heart surgery. How that happens we don't know, but welcome to international adoption. We first suspected it the first night she was home and we discovered a scar on her side that looked a whole lot like a chest surgery yet we had no record of that. Cardiology confirmed it and the good news is that they closed one hole, the other closed on its own, and she has a NORMAL heart and has been cleared from cardiology!!!
- In other news after numerous tubes worth of blood work we learned that it is quite likely that she has Celiac disease. Her celiac panel came back over 100....average is 4!!!! She sees GI at the end of this month to confirm but the nurse said with numbers like that we should be ready to make her gluten free....not quite yet though in case they do decide to do an upper endoscopy to confirm.
- Anya will also go to a Down Syndrome clinic at the end of the month and do a whole bunch of stuff there including neck x-rays (standard for kids with DS), a hearing test, etc. all in one stop shopping ;). This is similar to what we do with Oksana at the CP clinic at Shriners.
- She is continuing to do AMAZING. She is a rascal for sure but she is understanding more and more. She has earned her food back at the dinner table and is doing fabulous. She now signs "more", "eat", "drink", "swing", "book", "carrot", "shoes", "dog", "grapes", "help"....hmmmm...I think that might be it. She still struggles to pull out the right sign when needed so sometimes we get "grapes" for "shoes" :) but she is coming along nicely in her communication. I had a video of her signs but it is sideways so I have to see if I can get another one.
- I blogged quite awhile ago about her name change and at that time I couldn't share her given name. Now I can! Her name was Yoanna. We really did intend to keep it but after seeing the responses on people's faces when we'd tell them I kept wanting to say "I didn't name her!". I knew we couldn't spend the rest of her life doing that so we decided on an adapted version of it that became Anya!
- Anya eats incredibly well. Her favorite food is probably blue corn tortilla chips! If she sees the cabinet open that they are held in (yes, it does have a childproof lock), she will be there in a split second. She also loves fruit of all kinds, she eats veggies like they are candy....oh and she loves candy too! Going gluten free won't be as hard on her as it would be on the other 3.
- If Anya ends up in time out the number one reason will be for hitting or scratching her siblings. The number 2 reason will be for direct disobedience...with a smile on her face...did I mention she's a rascal?
- And finally, this one has nothing to do with Anya, but I'm so excited I had to share. We had a staffing with Oksana's IEP team today about her visit with the psychiatrist and it was so encouraging. They all reported great strides in behavior, ability to transition, etc. since the increase in Risperdal. And this, my friends, is proof that for some people the right meds provide quality of life. I pray that this is the beginning of great things for our Ukrainian princess!
I'll leave you with a fun picture of our Bulgarian Beauty! This is from our family photos that we just had done this weekend. To get her to smile we just had to sign "carrot" :)! For some reason she thinks that is the funniest sign! To see more check out the side of my blog :).
Monday, November 5, 2012
Homeschooling with a "rascally one"
As my title indicates we have nicknamed Anya "the rascally one" :). We worked hard at the beginning of this year to get some good schooling in because I knew from experience that things would get really interesting one Anya arrived. Here is Evan trying to do Science today:
Everything looks innocent enough, right? Evan is reading about the Respiratory System and Anya is checking out the toy catalog from Target. What could go wrong?
Oh look, Anya found a CD sitting on the table next to her and she decided to see what it would be like to flip Evan's hair with it. Notice he is not disturbed by the rascally one :).
Boy look at how proud she is of her discovery! A CD on Evan's head is just fascinating, but it produces no good reaction! Look at him just sitting there when she is obviously enjoying herself so much!
Hmmmm...what if instead of flipping his hair with it she just bops him with it...will that get a reaction out of him?! No? Seriously? What does she have to do to get this kid to pay attention to her?!
OK, if that won't work she'll climb on him and kiss him! You can guarantee that if you try to kiss Evan you will get a reaction! I think Science is over for today :).
Everything looks innocent enough, right? Evan is reading about the Respiratory System and Anya is checking out the toy catalog from Target. What could go wrong?
Oh look, Anya found a CD sitting on the table next to her and she decided to see what it would be like to flip Evan's hair with it. Notice he is not disturbed by the rascally one :).
Boy look at how proud she is of her discovery! A CD on Evan's head is just fascinating, but it produces no good reaction! Look at him just sitting there when she is obviously enjoying herself so much!
Hmmmm...what if instead of flipping his hair with it she just bops him with it...will that get a reaction out of him?! No? Seriously? What does she have to do to get this kid to pay attention to her?!
OK, if that won't work she'll climb on him and kiss him! You can guarantee that if you try to kiss Evan you will get a reaction! I think Science is over for today :).
Friday, November 2, 2012
Sweetness
I'm on a blogging kick now so look out :). It's feast or famine on this blog. This video is of my very favorite part of every day. The girls do their bed time routine together and Anya quickly caught on to the fact that we all kiss before bed so she loves to kiss Oksana! It's the sweetest thing ever and Oksana loves it! I feared how having a new sister would affect Oksana but I can honestly say I think it has been GREAT for her!
Thursday, November 1, 2012
Psychiatrist
Post #2 for the day so be sure you check out the Halloween pictures!
We met with the pediatric psychiatrist for Oksana. After a huge load of paperwork, time spent with Oksana, and time spent with me, this is the list we were presented with:
-mood disorder
-anxiety disorder
-Post traumatic stress disorder
-autism spectrum disorder (specifically PDD-NOS)
-Reactive attachment disorder
-ADHD (The one that I disagree with. She is VERY active. She really does not sit still much...but....it does not affect her negatively, nor does it affect our family or her school negatively. The good news is that if down the road there does become an issue we don't have to start from scratch...the diagnosis is there. Until then I'm just kind of ignoring this.)
So my first reaction was "WHAT? SIX NEW DIAGNOSIS?!" After a good cry...or two...or three...or maybe it was just one really long one, I realized that really they are all interconnected so many of them aren't separate diagnosis but rather the effects of just one or two of them. Does that make sense? Well if not it did to me and it made me feel better so I'm going with it.
So what does this mean? Not much really. We did increase her Risperdal dose. I was actually going to request that even if the psychiatrist didn't recommend it. She's doing much better on it but there is definitely room for improvement. We started the new dose today and she had a great day at school. I know it's only day 1 but hey, I'll take it! I asked the psychiatrist if she was going to add any medication. She was not at this point and I was very thankful for that. We are focusing on what is most adversely affecting her life right now and tackling that. In the end this doesn't change who Oksana is but it sure helps us to understand her better. It definitely sheds some light on what we have been seeing from her. I have requested a staffing with her IEP team so that I can share this with them all in one place and we can have it formally documented in her records. That has been scheduled for the 13th.
The psychiatrist said 2 things that really stood out to me. One was that Oksana is a miracle. She said that the fact that she is functioning like this considering all we've learned is amazing. She said that we are on the right track with her and need to keep doing what we are doing. That was good to hear. She also totally and completely confirmed my feelings about her placement in school. That was also REALLY good to hear since I've felt a bit like some of our IEP team thought I was going a bit overboard when I requested that we significantly decrease her time in the regular classroom and increase her time in special ed. They never said that, it was just my impression from some of the comments made. The psychiatrist went as far as to say that she should not be in the regular classroom at all. For now we will keep her in there because it's just for things like story time, and she is doing fine, but I do think that once she hits around 3rd grade and story time and calendar are replaced with paper pencil work she will rarely be in the regular classroom, if at all. I had also asked that they focus this year on her emotional health and behaviors and let academics come secondary. The psychiatrist said the exact same thing before she even knew that I had requested that. Oh yeah....it feels good when those mommy instincts kick in and do their job right!
So now we will continue to follow up with the psychiatrist. I have to call next week to let her know how Oksana is doing on the new medication dose. Then we see her again in January at which time they will do an EKG and a blood draw for some baseline labs. Until then we thank God that as hard as it has been to parent her, at least she isn't in a mental institution in Ukraine.
We met with the pediatric psychiatrist for Oksana. After a huge load of paperwork, time spent with Oksana, and time spent with me, this is the list we were presented with:
-mood disorder
-anxiety disorder
-Post traumatic stress disorder
-autism spectrum disorder (specifically PDD-NOS)
-Reactive attachment disorder
-ADHD (The one that I disagree with. She is VERY active. She really does not sit still much...but....it does not affect her negatively, nor does it affect our family or her school negatively. The good news is that if down the road there does become an issue we don't have to start from scratch...the diagnosis is there. Until then I'm just kind of ignoring this.)
So my first reaction was "WHAT? SIX NEW DIAGNOSIS?!" After a good cry...or two...or three...or maybe it was just one really long one, I realized that really they are all interconnected so many of them aren't separate diagnosis but rather the effects of just one or two of them. Does that make sense? Well if not it did to me and it made me feel better so I'm going with it.
So what does this mean? Not much really. We did increase her Risperdal dose. I was actually going to request that even if the psychiatrist didn't recommend it. She's doing much better on it but there is definitely room for improvement. We started the new dose today and she had a great day at school. I know it's only day 1 but hey, I'll take it! I asked the psychiatrist if she was going to add any medication. She was not at this point and I was very thankful for that. We are focusing on what is most adversely affecting her life right now and tackling that. In the end this doesn't change who Oksana is but it sure helps us to understand her better. It definitely sheds some light on what we have been seeing from her. I have requested a staffing with her IEP team so that I can share this with them all in one place and we can have it formally documented in her records. That has been scheduled for the 13th.
The psychiatrist said 2 things that really stood out to me. One was that Oksana is a miracle. She said that the fact that she is functioning like this considering all we've learned is amazing. She said that we are on the right track with her and need to keep doing what we are doing. That was good to hear. She also totally and completely confirmed my feelings about her placement in school. That was also REALLY good to hear since I've felt a bit like some of our IEP team thought I was going a bit overboard when I requested that we significantly decrease her time in the regular classroom and increase her time in special ed. They never said that, it was just my impression from some of the comments made. The psychiatrist went as far as to say that she should not be in the regular classroom at all. For now we will keep her in there because it's just for things like story time, and she is doing fine, but I do think that once she hits around 3rd grade and story time and calendar are replaced with paper pencil work she will rarely be in the regular classroom, if at all. I had also asked that they focus this year on her emotional health and behaviors and let academics come secondary. The psychiatrist said the exact same thing before she even knew that I had requested that. Oh yeah....it feels good when those mommy instincts kick in and do their job right!
So now we will continue to follow up with the psychiatrist. I have to call next week to let her know how Oksana is doing on the new medication dose. Then we see her again in January at which time they will do an EKG and a blood draw for some baseline labs. Until then we thank God that as hard as it has been to parent her, at least she isn't in a mental institution in Ukraine.
Halloween
Post #1 for today.
Just wanted to post a few pictures of Halloween. Anya was perfectly happy until people actually started arriving. She DID NOT like trick or treating. She cried through 2 houses and then we took her home where she happily handed out candy from the safety of her living room :)! The other kids had a blast.
Just wanted to post a few pictures of Halloween. Anya was perfectly happy until people actually started arriving. She DID NOT like trick or treating. She cried through 2 houses and then we took her home where she happily handed out candy from the safety of her living room :)! The other kids had a blast.
Rapunzel
Cinderella
A Knight
Waiting....Anya is still happy!
Very serious about his costume that he decided on and ordered 2 days before Halloween...good thing for Amazon prime!
3 of the little crazies!
The "Fab 4"
Crazy kids
Can you tell Evan was in character all night? :)
The one who didn't dress up but still had a lot of fun!
How Anya felt about Halloween! Actually this was taken today. It was my response to the comment "Oh I LOOOVE people with Down Syndrome. They are always Soooo happy!"
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