Some Ultra Anya Cuteness

I have a video that I thought might be fun to share and then a handful of pictures that I've taken on my phone.

The video shows 2 clips. The first one is from tonight. We were standing in the kitchen and in comes Anya wearing my high heel boots! She had gotten them on all by herself and was walking all over the house in them! The next one is at the grocery store. Anya loves for us to blow raspberries on her neck so through the whole grocery store she would throw her head back in the cart and blow to show me that she wanted me to do it over and over again. It cracked me up!

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She loves her sister's glasses!

Ready to wrap.

She's rockin' it!

Why do I buy toys?

Another version of a picture I posted on Facebook.  Brothers are so fun:).

Celiac Disease and a Lesson Learned

In all of the business of trying to keep Anya contained I haven't had a chance to mention that she was diagnosed with Celiac Disease.  In all of the blood work that our pediatrician did she screened for Celiac because it has a higher rate of occurrance in kids with Down Syndrome.  A normal number on this test is 4.  Our GI doctor said usually if a kid comes back with a number around 20 she will do an upper endoscopy to confirm.  Anya's number was over 100!!  No further testing necessary.  She is officially gluten free.  So of course, by default, my other family members are getting a ton less gluten in their diet.  I haven't made everyone else go gluten free but I make one dinner now, not one for them and one for her.  Our pasta the other night was brown rice pasta.  No one seemed to mind.  They even like some of her gluten free snacks and will ask for them over theirs.  Now get this....Oksana goes to school Monday and has one of her best behavior days in WEEKS.  Is this a coincidence?  I just don't know.  I do know that some people speculate that a gluten free diet helps kids on the autism spectrum.  I say speculate because the evidence is weak at best.  I might be grasping at straws here....OK I know I am grasping at straws but goodness if it helps even a little bit I'm all over it.

So I asked Oksana what she thought about going gluten free.  She was SO excited!  She wants to be like Anya and her special ed teacher, who is also gluten free.  I reminded her of the things she would have to give up and so far she is fine with all of it.  I really don't know how far I'm going to go with this but it certainly can't hurt.  In fact I really wish Evan would go gluten free too.  He has always struggled with GI issues and I think this would really help him.  That is a MUCH harder sell.  Let's just say he is less than thrilled with the idea :).

After yesterday's post about our lockdown and Anya's behaviors I wanted to give a quick update.  Anya has done so much better since we tightened her restrictions again!  In fact we have had little to no problems with the things she had been doing.  She can't handle the amount of freedom we were giving her at this point.  She was doing well with the firm boundaries which is exactly why we can't take them away.  That is my huge mommy lesson learned for this week! 

It's official....

The honeymoon is over.  After my last post my friend, Ellen, asked if it was possible that our honeymoon was over.  I really didn't think so.  We never had a honeymoon with Oksana so I didn't even know what a honeymoon looked like.  Now I can easily say it is over.  When Anya first came home our house was locked up better than a high security prison!  Through the first month she showed me that she could be trusted with a little less security.  We got lax about keeping doors closed that had child proofed door handles on them.  We  got a little more comfortable keeping the gate to the basement open and allowed her the freedom to go up or down to play as she pleased.  We trusted her to be in a room without adult supervision (always in ear shot though) without fearing that she would destroy anything or hurt a sibling.  Now....

WE ARE BACK ON LOCK DOWN.

Anya has lost almost every privilege we gave her and we are back to square one.  The honeymoon is over.  She can not be trusted for 5 seconds alone.  She has taken to smacking Oksana across the face, throwing things at her brothers and hitting them, finding every single possible thing she could do to get in trouble, etc.  At first I thought I just wasn't entertaining her enough.  I've used a lot of your suggestions and it is getting worse instead of better so we are on a high level of restrictions until she can learn what her boundaries are here a little better.  This morning was a good example.  She has cups with lids but they are not spill proof.  I have let her have free access to her drinks with  no problem until recently.  Now she will find a spot to sit and dump the water all over herself, so she has lost the ability to have control of her drink.  Then when Evan let her in his room for just a moment and then told her not to do something she bit him.  We are in a ZERO TOLERANCE mode on her behaviors because when we let some of them slide just a little, because we thought she could handle it, they came out with a vengeance.  This is how we have had to handle Oksana's behaviors too.  She is what we call a "given an inch, take a marathon" kid.  Of course we wanted to give Anya a chance to show us if she really needed that level of firm discipline as well and she has proven to us that she does. 

This makes my day a lot harder but that is OK with me because first of all, I know that the hard work I put in now will make my life easier later.  Also, I know that she will be in school next year so I just need to make it through homeschooling this year and do the best I can with what I have.  It also helps that I have talked to a couple of friends who have kiddos just like her.  They both encouraged me that this will get better.  They have confirmed that what I am doing is on the right path, given me some other tips, and encouraged me to stay consistent.  So now I can start praying that relief comes sooner rather than later!

The novelty has worn off

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!

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.

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 :).

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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 :).