Christmas!

It's Christmas night and it is hard to believe that after months of planning it is over!  I have to confess something.  I did not take one picture.  Quite honestly I don't feel bad about that at all.  I could barely keep track of everything going on without a camera in my hand so I sure wasn't going to miss more by taking pictures!  This year brought some great surprises and some excitement over anticipated gifts.  Once the sensory room is all together it is going to be awesome.  2 of the 3 swings were a big hit.  The one that is a bungee chair is going to a friend who will get better use from it.  Oksana's high tone makes it very difficult for her to be comfortable on it and Anya much prefers the platform swing.  Tonight we turned out the lights and turned on the disco ball.  Oksana was hanging out on the crash pad and Anya was swinging on the platform swing.  I put on some relaxing music and I seriously could have stayed there all night!

Oksana loved all of her stocking stuffer sensory balls and, of course, the crash pad is a huge hit.  Anya finally understands presents and kept signing "presents" wondering when she would get more!  I think her favorites are the 2 Elmos that she got.  The girl loves her Elmo!  Clayton's big surprise was a cell phone.  We were pretty adamant about waiting until he was 16, but as he gets more involved in things at school and at church we are finding more times when it would come in very handy.....so we buckled :).  He had NO idea and was very excited.  Evan loves his bungee chair.....and pretty much everything he got!

Christmas and Christmas Eve were overall really good.  Last year was rough with Anya.  She was very overstimulated and our Christmas was not a fun one.  We didn't make it through this year without a few bumps in the road.  There were periods of time when we literally could not take our eyes off of her or she would be getting herself into some sort of trouble.  Hitting children, grabbing stuff from them, and trying to touch anything that she knew she couldn't were favorite activities during those times.  There was just so much going on and so many new people.  Still, she was much better than last year.  Oksana did fantastic....until 6:00 tonight and then we got to see stuff we haven't seen in awhile that landed her in bed early.  I won't dish out the whole thing, I imagine you can guess that she was tired and overstimulated and it wasn't pretty.  She did manage to control herself from going into a total all out rage but it was really, really close.  Interestingly it was after time in the sensory room.  It all started because she was ticked that she had to come upstairs for a bath but didn't want to leave the room so I think we are going to have to set very strict boundaries for sensory room time until she can handle herself better.  I try so hard not to set expectations for holidays but every once in awhile I get bit in the behind by them!

I will post pictures as soon as the sensory room is complete.  My mom is here right now and it is doubling as a bedroom so I  might wait for pictures until she is gone.  I hope you all had a wonderful Christmas!

Sensory Room

I am so excited about this Christmas.  I can only share what the girls are getting because a certain boy tends to read this blog ;).  For the last couple of years we have bought the girls (or girl before they were plural) toys.  That's what you do for kids on Christmas, right?!  Princesses, games, puzzles, musical toys, etc.  Kids love that stuff!  Well not mine.  Year after year I buy those gifts, they get played with for 1 week, and they don't get touched again.  My girls just don't play with toys.  There are a couple that have gotten good use but they are few and far between.  Coming into this Christmas I was sort of dreading having to come up with stuff to get the girls since I have toy boxes and shelves full of unused toys. 

I asked Oksana to start thinking about Christmas a couple of months ago and there were only 2 things on her list.....a crash pad and some lights that kids can wrap up in and are often in sensory rooms.  Well the lights are very expensive so that wasn't happening, but as I researched it hit me that if sensory stuff is what she is asking for then we should give her sensory stuff.  I knew Anya would love it too.  She is my swinger!  At that point the idea came to create a sensory room.  We have an area in our basement that was basically a toy room and as you can imagine, no one ever plays in it!  Over Thanksgiving weekend we cleared it all out, and now it is ready to be turned into a sensory room on Christmas! 

I became so excited about this idea and I have researched for hours on the best products that my girls will love and the best prices on those products.  I talked to family members who have just as hard of a time buying for them and we pooled our money to make them a great room!  We will also include things we already have like our therapy balls.  Here is what they girls are getting for Christmas.  I'll post again when it is all together and being used.  Click the words below the picture to take you to the web site.


Crash Pad
 

Platform swing - A lady makes these on Etsy for a great price!  (this link takes you to the smaller one but she does make a bigger one, that is the one we got)

Bungee Swing

Lycra Swing (I had to get one that carried more weight because my boys are dying to get in this!)
 

 

Disco Light

Led Lights - I ordered these in multicolor and white.  I will line the perimeter of the room in them.  I was specifically looking for lights that had different effects....blink, fade, steady on, slow fade, etc.



STOCKING STUFFERS:

Inside Out Ball - They had these at Easter Seals back when we lived in Little Rock and Oksana LOVED them!  I'm so excited that I found them!

Sensory Spaghetti - This stuff feels amazing!

EZ Squeeze DNA ball
 

 

The meeting went great

I'll start by saying that we did not make a decision but it was a wonderful meeting. 

I have to admit that I went into this with guns blazing.  I did not trust these three "district specialists" at all.  I was determined to make sure that they didn't come in and try to push us into things we didn't want without knowing us or our kid.  They might have thought we were a bit nuts but we were DETERMINED that Oksana would not be put in the wrong placement.  A friend told us that they might present a certain program to us.  We were told that we should not put her in it because it is a pilot program and they are still learning.  Sure enough very shortly into the meeting they start talking about this program and I came right out and said "I was told that is a pilot program and I shouldn't put my kid in it."  After they picked their jaws up off the ground they admitted that was true they honestly told us the good and the bad about the program.  Larry asked about the credentials of the staff in that program.  They weren't any different than the staff we have at our current school, but the school psychologist and behavior specialist kept assuring us that they were personally training this staff and heavily involved in the program.  So Larry asked what their credentials were to be able to train the staff!  Well after I heard the credentials of the school psychologist I immediately relaxed and knew I could trust him.  He has extensive experience with trauma.  His first job was with the VA and he worked with veterans who had PTSD.  As we talked more and more we learned that he follows many of the same philosophies that we do on parenting kids with a past of trauma.  Once I trusted a bit more I heard what they were saying.  Considering our goals for Oksana, both the program I wanted, and the one I didn't want, have pros and cons. 

There was so much more to it but for the sake of your time reading this and my fingers I will move on.  In the end there are actually 3 options we are looking at.  The first is the pilot program.  There are some real benefits to it for Oksana but it still makes me nervous.  The second is the alternative school that I wanted.  There are some downfalls to this for Oksana that I did not anticipate.  The third option is one that we all agreed is probably overkill but we still wanted to have it on the table and get their professional input on our situation.  It is a private residential setting.  They have a school there but it is mostly for kids who don't succeed in any other options in the district.  Still, they are very knowledgeable about trauma and could offer us some good input. 

The plan from this point is that staff from each of those three settings will come observe Oksana in school.  Then they will say why they do or do not think their program is a good fit for her.  If they are positive about her ability to succeed in their program Larry and I will tour it and see it for ourselves.  Then we are coming back together mid January to discuss everything and hopefully make a decision.

The only bummer is that I really wanted this done before Christmas so we could make a clean break into a new school.  The decision just can't be made that fast.

I want to share the really cool thing though.  Our IEP team was totally advocating for Oksana.  They would ask the specialists questions that I didn't even consider.  They also encouraged me to trust the district specialists, and I'm glad they did.  We have such an awesome IEP team.  When I think of losing them as Oksana's team I cry.  When the meeting was over some of the team had to leave but a few of us were left behind.  I expressed to the district specialists that I did not trust them coming in.  They agreed that I had no reason to.  I told them that I could see now that they weren't there to benefit the district, but truly to help us make the best decision for Oksana.  One of them leaned in and said "I'm not supposed to say this but I am because I can with you.  I want you to know that at 5am this morning I got up to let my dog out and then I prayed over this meeting.  This decision is being prayed for."  I got to share with them the verse that means so much to me for my girls (Jeremiah 29:11) and tell them that I know God is in this because he told me that He will not harm her but he will give her a hope and a future.

At this point one of the district specialists, the special ed teacher, and the diagnostician are all crying.  The teacher and diagnostician expressed how hard it would be to let Oksana go.  We all got to talk about what a neat kid she is and what a blessing she is.  It was awesome.

I am very anxious to start the process of making this decision but I doubt anything will happen before the holidays.  My hope and prayer is that we can find the right placement for her so we do not have to come back and move her again.  This is not going to be an easy decision at all.

Quick catch up

I really should blog more often because there certainly isn't a lack of stuff to talk about.  For now I'm just going to do some updates and then I might expand on some of them later.

- I got a phone call last week to set up a meeting date to discuss Oksana's school situation.  Tomorrow morning Larry and I will meet with our whole IEP team as well as 3 district specialists.  We will have an open discussion about our goals, concerns, and feelings about Oksana's placement, and then discuss our options. Larry and I have done our research and already know where we would like to have her placed and where we definitely do not want her.  We will see if they agree.  I think they will.  If not they will get to see a side of me they haven't seen yet ;).

- If you've been following this blog for awhile you might know that I have tried and tried to figure out what to do to help Oksana with her stability.  She is an independent walker but she is still very unstable.  When we are in public she has to be holding a hand or holding onto something at all times or she runs into people, crashes into store displays, etc.  If there is any kind of crowd, even a small one, you can guarantee she will be on the floor.  She just can not balance through people.  She needs wide open spaces to maintain her balance.  For years now we have asked therapists and doctors to help us find a solution.  A walker is more support than she needs but 2 years ago we were told by Shriners that she isn't cognitively able to use forearm crutches.  Well our therapist was determined to help us find a solution so we tried a TON of different options and guess which ones are working out great?  The forearm crutches!  She doesn't use them correctly but since she is an independent walker her therapist doesn't care.  She just needs that little bit of stability and she loves them!!  She made it all the way through church, crowds and all, without holding my hand once!  She only uses them in situations like stores, church, etc.  There are a lot of places she won't need time like at home, or playing outside.  I'll get a video up soon.

- I haven't talked much about Anya, mostly because there isn't much to say!  She is doing AWESOME!  She is still, and will always be, stubborn and disobedient.  She still drives me crazy almost on a daily basis, but oh how I adore her.  We just did her 1 year post placement report and it was so fun to see her progress just from the time that we did her 6 month report. 

-Larry LOOOOOOOVVVVES his new job!  We are experiencing trial by fire since this is the "busy season" at church.  He has been working many hours, but we know it is temporary, and they allow him to be so flexible (for example so he can attend the meeting Tuesday) so it's fine. 

-The boys are another one that don't need much of an update.  They are thriving at their "school".  I just had parent teacher conferences and I couldn't be happier.  Clayton is getting very involved at church.  He is part of their tech team and serves from 1-3 hours a week helping them.  Evan, my incredibly shy guy, came running out of church a couple of weeks ago begging me to sign him up for winter camp with his youth group.  I couldn't believe it!  He goes in January.  We've been here for 2 1/2 years now.  That first year I really wondered if they would find their place here.  They have now and they are doing great.

- As I learn and read (maybe a bit obsessively ;) about bipolar disorder I have more and more compassion for Oksana.  Considering what she is dealing with, the things this child has achieved are mind blowing.  She has now indicated to us that there are balloons that bounce around in her head all day and that one of them tells her to hurt other people, hurt herself, and do bad things when she is angry.  This is not uncommon in bipolar disorder, and while we do not tolerate hurtful behaviors at all and are very firm in our boundaries and our discipline, it does give us new perspective that has been very freeing for us and for our relationship with her.  I think we are in a good place right now with her.  It feels great to say that after months of struggles.  Let's hope this lasts!

More to come soon.....

Bike!

Our family is involved with Variety Club here in St. Louis.  They have a number of programs for kids with special needs including helping them get equipment, therapies, etc.  They help us pay for private therapy for both girls.  They also just helped Oksana get her very own bike!  They have a big event once a year called Bikes for Kids.  Tons of bikes are donated and there is basically a party to present them to all of the kids.  They only give out a certain number a year, and you have to qualify, which really just involves filling out a form and getting a letter from a doctor and therapist stating why your child needs a bike.  Oksana has been riding an adapted bike in therapy for awhile now and she loves it!  When we told her she would get one of her own she was so excited and the first thing she wanted to do was race Evan ;). 

A couple of months ago we went to a bike fitting where they found just the right bike for her with just the right seat, etc.  They even let her pick the color....pink, of course.

Last weekend was finally the day she got her bike!  The event was at the gym of a college in the area.  The Rams mascot and cheerleaders were there and the place was full of kids and families.  We waited in the halls while everyone loaded into the gym.  When it was time to go in they lined us up in alphabetical order and then we went into the gym with people screaming and cheering and the kids were brought to their bikes.  Oksana was a bit overwhelmed but once she got on her bike she was thrilled!  They thought of everything.  They gave her a pink helmet to match the bike and put a bell and a flag on it.  Those are her favorite parts!  Unfortunately it was in the 30s that day so we didn't do
much riding.  When we got home I let her take it around the court a couple of times while we froze to death and then we parked it in the garage to wait for a decent day to ride.  Here are some pictures:

Waiting in the halls in her Bikes for Kids t-shirt.  She is using forearm crutches here.  I'll have to blog about that soon.



Rams mascot and cheerleader.  The cheerleaders were giving out pictures of themselves half naked to sign for the kids.  I probably could have done without that but they were very nice.

Happy kiddo!



The flag.  It cracked me up how much she loved the flag!

Here is a video of her riding it.  It has a handle on the back that I can use to help her steer and brake.  It's pretty cool!

 

Make a video - it's fun, easy and free!
www.onetruemedia.com

 

Suspended

Last Wednesday, after 4 very good days for Oksana, I got a call from the principal.  That is never good.  I adore our principal.  She has been an incredible support to our family, but I'd rather not hear from her in the middle of the day.  When she has to call it is really bad and usually means that Oksana had to be restrained.  She began explaining to me that Oksana was in the lunch room.  She dropped a piece of bread.  Now this was bread from Panera that I had sent with her to have with soup.  She loves this bread.  When she dropped it her para at the time did what anyone would do...she threw the bread away.  Now I don't know what kind of mood or frame of mind Oksana was in before this but you can cue the rage at this point.  She went insane and punched her para in the face.  Fist?  Open hand?  These are things I've been asked and I don't know.  In the end it doesn't matter.  She went on to require 3 paras to restrain her to stop her from attacking them.  Once they got her hands down she started trying to bite them.  They finally got her back to the special ed room where she continued to rage.  When it was over they let her sit down and eat at which point she started laughing hysterically (mania). 

I think everyone was at a bit of a loss as to what to do.  She is on an IEP so technically does not follow the same discipline guidelines as other children.  The guideline for this is out of school suspension.  The principal wanted to give it a try to see if it would have an impact.  Of course we also feared that it would have the opposite effect and that she would like it.  I assured her that if she wanted to try this I would do my best to make her day boring.  So she spent the day here Thursday cleaning her room and sitting around doing nothing.  I don't think she was happy but I'm also not sure it was a great deterrent. 

The other conversation I had with the principal that day was about the possibility of finding another placement in the district for Oksana.  We have discussed this before but it never went anywhere.  I'm curious to see if it does this time.  Our school has honestly done EVERYTHING possible to accommodate Oksana and help her.  When she is still punching paras we are out of ideas and may need to look at a classroom setting that is more equipped to handle her behaviors.  I don't know if, when, or where that will happen so I'm just sitting tight until the next episode.  We have started the new meds since that day so hopefully they will help her too.   I hate bipolar disorder.

Stigma

I've been thinking about blogging for weeks now but I haven't known what to say.  I find myself really struggling with telling people the truth about Oksana.  I find myself asking constantly "Should I tell this person?", "Should I share that with this person?", "Will this person see Oksana differently if I tell them?".  There is such a stigma attached to mental illness that isn't present in any of her other diagnoses and I am feeling that weight of that stigma.

We want and need support but if I really told people the things she says and does they would never look at her the same way again.  Very few people know the true depth of Oksana's mental illness.  I even struggle with it on this blog.  I wrote a post that I have not published about the first week in November when she was very unstable.  Some disturbing things happened, and we are now adding yet another medication to her already insane number of meds. 

The thing about it is that the vast majority of the time Oksana is just Oksana.  She is the same kid, with the same interests, and the same life as the girl before bipolar.  Yes, we have periods of time when she isn't that kid anymore, but I don't want people fearing her or not wanting their kids around her.  It's such a fine line and a horrible stigma.  I want to be a part of breaking the stigma but will that come at a cost?  These are the things I ponder these days......

FUN!

I'm happy to get to write a fun post for a change!  We've had a lot of things happening here and I'm way behind on posting!

Evan recently competed in another horse show.  It was a fun one sponsored by the barn where he rides.  He is primarily jumping 18 inch jumps right now but also does 2 feet now and then.  At the end of the show they get to dress up with a horse.  Evan started thinking about  next year's costume by the time we left the show! 

As if that wasn't exciting enough, Larry and I got tattooed :).  This was my first and his second.  We had both been wanting to get our wedding rings tattooed on.  We decided to get Mt 19:6 on our ring fingers.  It says "So they are no longer two but one flesh, therefore what God has joined together let no one separate".  Larry's worked out good to look like a ring but my finger was just too small so we decided to get mine up the inside of my ring finger and I still wear a small band. 

 

 



Clayton was baptized this month too!  This is such a big deal for him because he is fearful of having his head under water.  He is my biological sensory kid :).  Even though he gave his life to Christ many years ago I thought it would take him much longer to get baptized.  We are so proud of him!  Larry got to baptize him and to mark the day we bought him a sword with Ephesians 6:17 engraved on it "Take the helmet of salvation and the sword of the Spirit, which is the word of God".  He absolutely loved it!

Finally Halloween and then I think I'm caught up!  Pumpkin carving is always fun with my crew.  The boys love to be creative.  Oksana wanted a princess with a smiley face. 

This is Evan's "scene" of Bob shooting the apple over Joe's head :).

My new favorite picture!  It captures our insanity well :).

Preciousness!

Pumpkin Pi!

Oksana wanted to be Pocahontas and I was going to have Anya be Elmo.  I searched and searched for the perfect Elmo costume.  I finally found JUST what I was looking for on Etsy.  I ordered on Oct 3 and even corresponded with the lady about it.  The week before Halloween...no costume.  I started emailing her to ask if it would be here on time with no response.  Next thing I know I can't even get into her etsy page like she shut the whole store down.  UGH!  I decided just to throw her Cinderella costume from last year on and she didn't want anything to do with it so she went out as a cute kid with Down Syndrome!  This year went much better than last year.  She screamed "NO" at the first couple of houses and then quickly figured out what was going on.  After that she was ready to hit every house in the neighborhood!  The boys just passed out candy this year but had a blast.  It was rainy and cold so we didn't have a ton of kid but that just means they got to eat the leftovers! 

 

I think that just about sums it up!  Whew....on to November!

Liebster blog award

My friend Ellen awarded me the Liebster blog award!  The purpose of this award is to help you discover great new blogs.  I will answer some questions that Ellen asked me and then I will choose 2 blogs that I think you would like and give them a set of questions to answer about themselves.  Here we go:

1. Describe your family in five words.....unique, crazy, fun, challenging, and loving
2. What is one dream you have for the future?  Do I only get to pick one?!  Too bad, I'm picking more than one :).  1) That my children would grow to love Jesus and that our family would reflect Him in all we do.  2) That Larry and I will be an elderly couple still passionately in love with each other  3)  That I don't end up in a padded room before those two things happen.  Laugh all you want, but some days it's the best I can hope for!
3. What is your favorite book and why.  Come on, Ellen, you're killing me here.  How do I pick?!  I love Christian fiction.  One of my favorite series of books ever is The Bug Man by Tim Downs.  He is a Christian but these books don't have characters who struggle with life only to find hope in Jesus (though I do like quite a few of those too).  Instead, his books are about a forensic entomologist.  He studies the bugs that infest dead bodies.  Sounds like something you want to read right before dinner, right?!  Actually they are incredibly funny.  Tim Downs is a speaker for FamilyLife's Weekend to Remember.  Back when Larry was an event planner for them, Tim was one of the speakers at a conference that I attended as well.  I figured I'd better look into his books if we were going to be working with him, and I ended up reading pretty much everything he has written in just a few weeks.  Don't get me wrong, I like non-fiction too but that's not as fun to talk about as maggots and blow flies ;).
4. Who has had the biggest influence in your life  My mom, definitely.  Also a couple of teachers who really took an interest in me and encouraged me. 
5. What is your favorite TV show  Right now I'd say Parenthood.  Larry and I also loved Lost and many others.  We aren't sit down and watch TV shows when they are on TV kind of people.  We tend to be more find it on Netflix and run through 5 seasons in 2 months kind of people!  We watched The Adventures of Merlin with the boys and really enjoyed that too.  I love something we can watch with the boys but that is not always an easy task. 
6. What is your biggest success  My marriage.  I adore that man.  He is the best decision I ever made in my life. 
7. You have three wishes, what are they?  Oh boy, that might be a level of honesty you aren't ready for!  Ok here goes 1) I wish Anya would stop spending her ENTIRE day saying "Mom, mom, mom, mom, mom, mom, mom, mom, mom, mom........" 2) I don't want Oksana to be someone she isn't, but I'd take away mental illness in a split second without even thinking twice about it.  3) Number 3 is a toss up between a maid and a chef.  It's hard to say which I despise more, cleaning or cooking.
8. You have a day all to yourself, what do you do?  Well I do have all day to myself 2 days a week now...at least until 3:00.  I love to have lunch with friends.  Sometimes Larry works from home those days and we like to have lunch.  Do you see a theme here?!  Some days I sit and do nothing and wonder where my day went.....and I'm OK with that.  I almost always say I'm going to clean but based on the sentence I just wrote before this you can probably see how that goes!
9. Something you are proud of - How about someone I am proud of?  The answer to that would be Clayton and Evan.  These boys have taken on the roll of big brothers to two former orphans with special needs like they were created for it.  Don't get me wrong...those girls make them crazy sometimes, but that's why their rooms are in the basement :).  Those girls adore their brothers and there is a good reason for that...the boys are very good to them.  On top of that they have started this new homeschool program this year and it is intense with a capital I!  Wowza!  While they have had some struggles and some failures, overall they are blowing my mind at what they are learning and how well they are doing.  They are devoted to their passions of horseback riding (Evan) and video editing (Clayton) and Clayton is getting baptized at the end of this month.  They are pretty cool kids!
10. Why do you blog?  I started blogging way back when Larry and I were missionaries to keep connected to our supporters.  Then we started adopting and I blogged to document the process for myself and for those who came after me since I know following other blogs was an obsession of mine when I was in the process!  Now I don't know why I do it.  Honestly, I think about quitting frequently.  I guess the reason I don't is because of the emails and comments I get that say they read my blog because they know I'm willing to be real.  There weren't many people willing to be real with me in the beginning and I ended up feeling very alone.  I don't want that for anyone else.  It's a fine line that I constantly struggle to walk as I blog because I'm also not in the least bit interested in opening myself up to the criticism of complete strangers.  Do not interpret criticize as disagree.  I don't expect everyone to agree, but I do expect them to be civil.  I've seen enough of my friends get ripped to shreds by people who use the anonymity of the web to attack them.  For now I keep pressing forward for the faithful few who actually still care what I have to say here ;).

Now to pass this on to two more bloggers. This was not easy.  I read a lot of fantastic blogs about some incredibly families who have encouraged me in my journey.  I finally chose 2 that I think you will like. 

The first one is Pearls of Price.  I haven't been reading this blog for as long as some others, but often when she blogs I find myself saying "I can relate!"  Just today I was reading an entirely different blog and one of the comments really struck me.  I could have written it myself.  I clicked on the name of the person who posted it to see if she had a blog and imagine my surprise when it took me to Pearls of Price!  This lovely lady has 5 children and 2 are twins adopted from the foster care system.  She is real about her struggles with the twins and has encouraged me through our poop issues with Oksana!  She has a beautiful family and a beautiful faith and trust in God.  I think you will really enjoy Pearls of Price as much as I have.

The second blog is Dear Little Girl of Mine.  Sharon is an online friend of mine.  We met when we discovered that our girls were in the same orphanage in Bulgaria.  We were both there at slightly different times and got pictures of each other's girls.  Sophia is her beauty from Anya's orphanage but they adopted Bella at the same time from a different orphanage.  Sharon has a whole bunch of amazingly beautiful children.  She has biological children as well as children adopted internationally and through foster care.  Many of them have special needs of some sort.  This blog is one of the most beautiful blogs I've ever seen.  Wait until you see her photography.  It is amazing.  I love every single update she gives and I know you will too!

Here are my 10 questions for them should they decide to accept the challenge ;):
1.  What is your favorite post on your blog?
2.  Why do you blog?
3.  What is your favorite book and why?
4.  What is your favorite thing about each of your children?
5.  You have 3 wishes.  What are they?
6.  What do you think is the best and the most challenging thing about adoption?
7.  What do you like to do to relax?
8.  Something you are proud of...
9.  What is your family's favorite meal?
10.  What is your favorite room in your house?

A Time of Renewal

If you've read any of my recent posts you know that this summer was a rough one for our family.  It wasn't all about Oksana, although that was definitely the largest part.  It was attack, after attack, after attack in many areas of our lives.  We were definitely in a time of trial and testing.  The refining process is always a painful one.  I wish I could say I came out with a shiny new view on life, a shiny new appreciation of suffering, or a shiny new passion for Jesus, but really I just struggled.  My BSF (Bible Study Fellowship) study last week said "He will use even the evil that comes into your life for your good and His glory".  Deep in my heart of hearts I believe that, but right now I'm just having a really hard time seeing how good can come from this.  But I digress....that's a story for another day!

This past week has been a time of much needed renewal for me.  We've had a much needed reprieve from trials.  In this past week:

- Anya has done great in school.  She was kicking kids for awhile (aka boundary testing) but even that has stopped.  She is thriving and growing. 

-Oksana is doing much better.  She is very stable at home and we are having almost zero behavior issues.  At school her significant behaviors are coming much less frequently and even those are much less intense than they were.  I definitely feel like I have my kid back now.

-Clayton and Evan started their homeschool program where they go to school 2 days a week and are home 3 days a week.  On their home days we are doing assignments given to us by the school that correspond with what they learned in their classes.  It was a rough start because it is very intense but we are getting in the grove now and they are both doing fantastic in this setting.

-I am getting 2 days a week to myself.  My girls have a few of those days off of school this month so they are going to be few and far between but I'm going to enjoy every single one of them!

-We made a big decision.  At this time we are not going to foster or adopt and I honestly don't think we ever will. We went in to this before the bipolar and before the summer from hell.  I read in a book about bipolar disorder that "stable" is a relative term.  That can be hours, days, months, or years depending on many factors.  Oksana is stable right now.  That doesn't mean she always will be.  We feel strongly that what resources we have left in us need to go to nurturing ourselves as parents and nurturing the 4 kids God has blessed us with.  If God ever changes that I'll be sure to let you know, but don't hold your breath ;)!

-My husband is starting a new job next month.  This is the biggest blessing you can ever imagine.  He is currently working 3 jobs.   The main job, the one that is his least favorite, is the one that pays our bills and carries our insurance.  The other 2 jobs are smaller part time jobs that he loves and is passionate about.  They are also both ministry positions of some sort.  BOTH of those part time jobs offered him full time positions on the same day!  We were in total and complete shock.  After much prayer and agonizing we chose the job that we feel is best for our family, and he will still keep the other one part time.  2 jobs instead of 3, and both of them being his passion, makes me a happy, happy mama!  For those of you reading this who are local, Larry is going on staff with Calvary.

-The job that he is leaving is at a business owned by his parents.  When he started the job we sold one of our cars and he stared driving a company car.  We knew that if he got a new job we would need a car.  After some research, my husband decided to ask his parents if they would be willing to sell us the company car.  It gets great gas mileage and is big enough to store his gear when he plays guitar at church.  He approached his dad and was told that they decided to gift it to us....gift it...as in GIVE, as in free, as in we don't have to buy a car.  A HUGE, HUGE BLESSING TO US!

Do you hear my sigh of relief from over there at your computer?!

The aftermath of the diagnosis

Since my last post I've spent a lot of time reading about bipolar, talking to various agencies and organizations, working with school to make a plan for her, etc.  It's been busy.  The behavior therapist came out last week.  Although her mood and behavior is still up and down, even with the Risperdal added in, Oksana is emotionally stable in our home at this time.  I talked to the behavior therapist about the few issues we still have and how we handle them.  The decision was made that we do not need her at this time.  I appreciated her honesty.  We are on their radar now so if anything changes all we have to do is make a call and we will pick up where we left off.  It's good to know that option is there. 

We are still looking into things like respite and various programs we can have access to through grants and such.  There is a lot out there but not all of it is the right fit for our family.  The biggest recent changes are in Oksana's schooling.  We had an IEP meeting last week that was pretty incredible. 

I know I have mentioned here before that I have felt for awhile that Oksana needed to be pulled from the regular classroom.  I could see that it was a source of stress for her, as were many other aspects of school, and I felt that in order for her to learn we needed to reduce stress where possible.  While our team agreed with me to some degree, they also had been reluctant to give up on the regular classroom.  We compromised last year.  She was still in there more than I wanted but less than they would have probably wanted.  By the end of last year it became apparent that Oksana being in the regular classroom was a joke.  It became a major issue just to get her through the door at points. 

I don't know if it was that, the behaviors, the bipolar disorder, the fact that she has made no educational progress at all since Kindergarten, or a combination of all of those things but when we walked into the meeting this week we were all 100% on the same page!  Not only have they pulled Oksana almost entirely out of the regular classroom, but they have recognized that she is not going to benefit at all from a traditional academic curriculum.  It was time for everyone to be honest and realize that Oksana is never going to college.  It is time to prepare her for life.  Because of that we are transitioning her to a functional curriculum.  I didn't know much about that, but when they presented it to us I almost did backflips.  This is just what Oksana needs.  If you aren't familiar with it, the basic concept is that Oksana will still learn but she will do it in a way that helps her to function in society and her learning will all be done through real life skills.  Here are a couple of examples they gave:

-Oksana will still learn sight words but while other second graders are learning words like "green", "these", and "what", Oksana will be learning "men", "women", "exit", etc.  That certainly doesn't mean that when the word green comes up in a situation she won't be learning it but her education takes a different focus now.

-Oksana will still learn math but it will be done through "jobs" for the school.  An example I was given is that if the nurse needs 10 bandaids put in each baggie she would be given that "job".  She would even have a work station where she would sign in, do her job, and sign out.  Through that job, which gives her education meaning, she will be learning counting and one to one correspondence.

-Oksana will no longer be required to write anything but her name (so she can sign documents although she still can't spell or write her name).  This is a place where it is just time to be honest.  The chances that Oksana will ever spell and write are slim to none.  So now the focus is on finding out how to give her the power to "write".  This will be done through technology.  To make it functional she will "write" things like birthday cards, thank you notes, party invitations, etc.  She will still be learning through all of this but it has purpose and the focus is on preparing her for life, not college.

Does that make sense?  This is new to me so if you know more about it I'd love to hear from you.  We also now have a behavior plan in place as well as a crisis plan for when she "snaps".  I think this was one of the most positive and exciting things I've done regarding Oksana in a LONG time.  We are all hopeful that this will help her finally start to learn and thrive in school.

The latest in the saga of Oksana....we finally have an answer

Sometimes I wish this blog was private.  I'd love to be able to type out every little detail here because I know it would be therapeutic but I can't.  Still, I'm sharing far more here than on Facebook where I've been completely silent on the subject.  Somehow sharing this with the handful of people who actually read this is a lot easier than posting it for hundreds of people to see.

I've alluded to the fact that Oksana was very challenging this summer.  Actually "very challenging" doesn't begin to describe what we have been through.  Now I'll pick up where I left off......I guess it was the first days of school.  I mentioned that the psychiatrist got us in on Monday.  Our appointment was after yet another nightmare day of school.  We were the last appointment of the day.  By the time we left there the lights were out and the doors were locked.  In the past I had debated leaving our psychiatrist.  On Monday I was SO glad we didn't.  She was wonderful to our family.  She sat and listened to me spew what had happened over the summer and at the start of school.  She told me to tell her EVERYTHING because she didn't want me leaving her office feeling as if I had not been heard.  She asked how I was doing, which was so refreshing since many doctors just focus on your child.  She listened to all of my questions and fears and never said "Oh that won't happen" or "You don't know what will happen in the future".  Instead she gave me an answer or suggestion to each thing I was worried about no matter how ridiculous.  I think I was with her for about 45 minutes.  In the  meantime Larry was in the lobby with the girls.  At that time she already knew what was going on with Oksana but it was time to bring her in.

Oksana came bounding into the room.  She got a teddy bear off of the shelf and sat on the couch.  She squeezed the bear, bounced on the couch, rattled on about various things, etc.  The psychiatrist started asking her questions "Oksana, how are you?  What did you have for dinner tonight?  How is school?  Who is your teacher?  You are doing such a great job pooping on the potty!  Do you get angry sometimes?  Tell me what makes you angry."  As Oksana talked, the psychiatrist pointed things out to me.

"Erin when you look at her right now what do you see?" 

"Ummm...should I see something?"

"She is very elated at this point" (a nice way of saying the child is so hyper she is bouncing through the roof)

"Oh, yeah. That's Oksana."

"No.  This is worse than I've ever seen her.  This is not normal for Oksana and certainly not for an 8 year old girl.  Do you hear how she is talking to me?  That is called compressed speech."

During Oksana's conversation with her about the recent events at school I honestly was creeped out.  As I watched her the psychiatrist turned to me and said "What do you see as you watch her talk to me about this?"

"She is getting joy from it.  She is smiling while she talks about what she did."

Disturbing, because what she did was very violent.

There was so much more to this appointment.  I'm really just giving  you the highlights to help you understand how our psychiatrist worked with us to make the diagnosis.  It is one that Larry and I have been suspecting all summer.  We've done our research.  We knew she fit so it didn't come as a shock to us but it's still not what a parent wants to hear.

Oksana has early onset bipolar disorder.

Early onset means that it is very likely genetic.  It manifests itself differently than bipolar in adults.  The mood swings are more frequent and the depressive part tends to come out as aggression rather than depression.

She was in a manic phase in the office.  Once we understood what that really is we could point out clear times throughout the summer when she was manic.  Times that we looked at each other and said "What is up with her?!"  Early onset bipolar is often misdiagnosed as ADHD because of this manic phase.

What seems to have happened is that at some point while Oksana was on Risperdal the bipolar disorder set in but it was masked by the Risperdal.  Seroquel is not as strong of a medication as Risperdal so when we started to pull off of the Risperdal and move onto the Seroquel we got to see what was hiding underneath.  The Seroquel just wasn't sufficient to hide it.  It was bad enough at home but when we changed everything on her and sent her to school everything got kicked up a notch....or 50 notches....because she just couldn't cope with it.  The doctor decided to try keeping her on Seroquel because it has a component that reduces drooling, and then add a small amount of Risperdal back in since Risperdal was so effective in the first place.  On the way home we got our prescriptions and had them in her before bed that night.

The next morning we could already see a difference.  She had much better days at school and we saw a difference at home too.  She still struggles, but the behaviors come much less frequently and they are more easily controlled.  We will go back in a month to reevaluate.

We have a behavior therapist from the Center for Autism Education coming to meet us on Tuesday and we are in the works with a number of organizations and mental health centers to get our family help.  We believe that if all of this had happened in a couple of years when she was bigger and stronger she would have been dangerous and ended up hospitalized.  We are preparing now to either avoid that, or at least know what to do in the event that she would need inpatient care. 

While I am very sorry this all had to happen, Larry and I are very relieved that our family is now getting support.  We aren't doing this alone anymore. 

The start of the school year....2 very different stories

I guess I'll start with the good news.  Anya is a Kindergarten rock star!  That child has already won the hearts of the entire staff.  She loves school, and besides a look of concern and a whimper when I dropped her off the first couple of days, she has been awesome.  The best part is that every time I pick her up she sees me, shrieks with joy, jumps up and down, and throws herself in my arms.  My heart could honestly explode.  Speaking of my heart, I cried my eyes out the first day I dropped her off.  I even managed to wait until I walked out so that she couldn't see me which was an act of God.  Her special ed teacher hugged me and said "We will treat her as if she were our own."  I told her that I had no doubt about that and it was the only reason my child was sitting in that classroom!  Anya has her fair share of behaviors and she really drives me insane sometimes but boy did I miss that kid!

This is the part where I debate what to share about Oksana's first days.  I won't give details.  Here is what I will say.  It has been bad....really bad.  So bad that the school has totally changed their tune.  They are really seeing her as a mentally ill child.  Her diagnostician thinks that this is the RAD coming out.  What ever it is, I don't care...all we know is she is getting worse and not better.  That has kind of changed everything.  They are now seeking outside help to help them with her.  Seriously, it was that bad.  I asked them what is the worst case scenario.  They said she will go to an alternative school where the most disturbed children in the district go to learn to manage their behaviors so they can be put in a regular school again.  I asked if we were to that point.  They said not yet. We all feel like her meds are a big part of this.  The new med just isn't working.  I called the psychiatrist and when I told them the things that were happening our appointment went from being in November to being Monday.   She was finally finding success at the end of the last school year on Risperdal so we know that with the right medication she can function better not just in school, but in life.

This isn't only a school issue for her.  The second day of school she got pulled out early for her private therapy.  I think she believed that we would not let her go to therapy if she misbehaved in school so she held it together.  The teachers were so excited because they thought maybe it was just first day jitters.  Well a child in this state can only hold it together so long, so the result was that the therapists got to experience her wrath.  The third day at school was awful again.  Now we are on the weekend and I'm curious to see how she does.  I'd be tempted to think this was because of school except that, as I've indicated, summer got extremely bad.  School has definitely put her in fight or flight more often though.

Again, in the end I think this is 90% about meds.  I've mentioned before that my biggest fear is what will happen when she is older and bigger.  If we don't get this figured out now she will be able to really do some damage.  There is good news in all of this.  Because she has gotten to this point and now school has seen it too, we are finally getting some help.  On Monday morning I have an appointment with an organization that is going to get us set up with a number of resources to help our family, including some respite and the funding for it. How awesome is that?  We desperately need this help.  This has really taken it's toll on us.  A wise friend who is a therapist to some very severely disturbed teens told me that the mental health of our family can not trump her mental health.  We have to keep our family healthy to be able to help her.  We haven't been doing that but things are about to change.

In the end I'll say what I told her special ed teacher in response to the email that explained the train wreck of a day she had yesterday....."I know this isn't a fun way to start the year but I assure you that if....no WHEN we get Oksana stable you will see the joyful, sweet child that is in there.  I promise that she's worth it!"

.

Oksana's school placement

2 days until school.....after the summer we've had I'm literally counting the minutes!  When I went to Kindergarten orientation with Anya I stopped to talk to Oksana's new special ed teacher and I was SO impressed!  She is young, like right out of college young.  One of the first phrases out of her mouth was "I love behavior kids".  Well praise God because if that's the case she is going to LOVE Oksana!  She also talked to me a bit about how we will communicate, how she will keep Oksana motivated to have good behavior, and the fact that she will not reward Oksana for good behavior but will find many other ways to reward her through her day.  Hallelujah! 

So her IEP meeting is coming very soon.  I already had a talk with her diagnostician.  She is amazing, by the way.  I told her that I am very concerned about Oksana.  Her behaviors, of course, are an issue, but she is really not progressing much academically either.  I can't decide if it is a brain thing or if it is a stress thing.  Obviously kids under stress can not learn well and school is a stress for her.  The regular classroom has been a trigger for her for a long time now.  In Kindergarten she was fully included and it was a nightmare.  I pushed them to increase her time in the special ed setting in first grade but they still kept her in the regular classroom some because they felt she could do it with the meds on board.  Well she couldn't.  That classroom continued to be an issue all year last year.  I think we are finally to a place where we are going to consider that Oksana needs a small environment full time to reduce her stress, manage her behaviors, and help her to learn.  I think there are some on our IEP team who will not necessarily agree with this so I'll be curious to see how it all plays out.

For the record, I've also expressed my concern about her lack of academic progress to her neurologist.  She feels that if we don't see some good progress in the next year or so we might need to do some genetic testing to see if there is something else going on that we don't know about.  I can tell you one thing....she has many people working hard to help her so it is not for lack of effort at all!

Another small change we are making this year is in her para support.  In kindergarten she had a full time one on one para.  In 1st grade she had 2 paras, one in the morning and one in the afternoon.  This year we are going to try not giving her an assigned para at all.  There will be many people in the classroom and anyone who is available will help Oksana whether it is to answer a question, write her name, or take her to the bathroom.  We had some issues last year with her freaking out if she didn't have the para that she thought she should have and demanding that they were with her at all times, even when the teacher was trying to help her with independence.  If they didn't meet her demands she would blow.  I'm going to be very curious to see how this new set up works for her.

While I am not sure that Oksana will be in the regular classroom much I was also told that her regular ed teacher was arranging her room with Oksana in mind just so that she can move freely through it.  How cool is that?  She has some really incredible people ready to help her this year.  I have a lot of hope! 

At one point in my conversation with her diagnostician, as I expressed my concerns about her meds, behaviors, and learning, the comment was made that there may come a point when their school is not going to be the best place for her.  That is my biggest fear.  I can't think that far ahead right now.  Let's just get her through second grade and try to make it so that thought doesn't have to enter anyone's head again!

My baby is going to school!

Last year, when Oksana was in first grade, Anya often made trips to school with me for various things.  Towards the end of the year those visits became for her as they evaluated her for various therapies, etc. to see how to best serve her in her kindergarten year.  Anya was NOT  happy about that.  She would scream and yell "NO!" at anyone who came near her.  Once she settled in she would cooperate for them but she was definitely on edge.  Because of that I dreaded this orientation.  In our orientation the parents take the kids to their class, introduce them to the teacher, and get them settled before leaving.  The parents then go to another room to hear about policies, procedures, etc. while the kids visit with their teacher, get a tour of the building, and get a chance to go through the cafeteria line to get a snack.  I was prepared for this to be a royal disaster.

When we got there Anya was definitely apprehensive.  She had a furrowed brow for quite awhile and didn't really want anyone talking to her.  I took her over to the carpet where all of the kids would sit with the teacher when the parents left.  Luckily that carpet had the alphabet on it and Anya LOVES to sign the alphabet so that got her interested in something.  The paras and teacher from her special ed class came in to see her and she came over and got very close to me because I think she sensed I was going to be leaving.  She cried for a minute when I left but got over it quickly and did AMAZING!!!  She got to help the teacher pass out name tags and they said when she got hers she was SO excited!  She stayed with the para the whole time and participated in everything the kids did.  She rocked kindergarten orientation!  At the end she ran up to me and jumped into my arms...which is pretty huge and totally warmed my heart!  Everyone was amazed by her and the change in her since they all met her last school year.  This girl is blowing us all away!  Of course they'll get to see her true colors in time ;).  Anya still has a fair number of behaviors but I think with the great staff they have, the great structure they provide, and the many activities that will challenge her, she will do great.

Many people ask me if Anya will be fully mainstreamed.  The answer is no.  Of course she will have a regular classroom teacher and will be in there for a small portion of her day and any special events.  Anya has very poor receptive language and still has many areas to catch up in considering she has only been home 9 months.  Thankfully she has the MOST INCREDIBLE special ed teacher.  There will be 7 kids in her class and the majority of them have Down Syndrome.  Her teacher knows DS very well and the kids in her class absolutely thrive.  I honestly could not be more thrilled about Anya's placement.  She is going to grow so much in this setting!  School starts on Wednesday!  I didn't take a ton of pictures but here are a few:

Her special ed room has a sensory bin and this was in it. It is a Ziploc bag filled with a smooshy gel.  She played with it the whole time we were in there.

This is in her regular classroom.

This is in her special ed room.  They had to find her a teeny tiny desk :).  She is easily the smallest kid in the class.

I'll do another blog later on Oksana's placement and new teachers soon.  Before I go I just want to touch on my last blog.  Oksana had to be taken off of Risperdal because of some side effects and we transitioned her to Seroquel.  I never could have imagined what a transition like that would do to her.  We saw things in her that quite frankly made us scared for her.  These are things that are one thing at 8 and a whole other at 16 or even 13.  We have had to make some significant decisions about how to build supports around our family so that we are prepared if some very hard decisions need to be made regarding her mental health in the future.  Let's just say it was eye opening but it was good in the sense that we avoided a catastrophe and will be prepared for anything like this in the future.  I will not delve deep into this publicly but I will say that Oksana is doing much better now and she is as ready as she can be for school.  I have many positive things to say about the year she has ahead of her......

Where I've been

I really enjoy blogging.  It's kind of therapeutic for me, however, it serves another purpose too.  Back when we were in the process to adopt Oksana I read MANY blogs.  I'd sit up at night reading beautiful story after beautiful story and awaiting the day that one of those stories would be mine.  Well as many of you know our story was not what I thought it would be.  I was shocked and I felt alone.  Why had all of those other families had wonderful experiences and we were suffering.  Then I joined some online groups and guess what I learned?  Those families were suffering too!!!  I couldn't decide if I felt more relieved or betrayed. 

I've always wanted to be honest on this blog.  Sometimes I get comments saying how people appreciate that I don't sugar coat things, but the truth is that there is really only so much you can put on a public blog.  Obviously I don't share everything, just enough to let anyone else struggling know they are not alone.

Then there come times in our life when things happen that I don't even know how to begin to share.  And so I say nothing.....

The fog is clearing a bit and so I'll just say

There are some things love can't fix

There are some hurts that change a child in ways we never could have imagined

....and mental illness sucks......but there is hope......

Don't talk to people who aren't there

A long time ago I shared on here that Oksana had imaginary friends.  She calls them "ticks".  There are a number of them.  The main ones are tick (yes he is a "tick" and his name is "tick") and tuke but there are many, many more.  She often creates them based on other obsessions she has or events in her life so, for example, she has one named gluten free, one named room 51 (the safe room that she frequents at school when she is having a meltdown), etc.  These "people" are her hands.  She holds her hands up in front of her face in a certain way and talks to them.  It is suspected by almost everyone that this is how she coped with long days stuck in a bed.  Makes perfect sense, right?  The small problem is that she isn't there anymore. 

Before Oksana started school we didn't restrict ticks much at all.  We figured they would eventually go away on their own to be replaced by real people and real relationships.  Ha!  Oh sorry....it's probably not appropriate to laugh there.  Anyway, I remember when we were going to Kindergarten Orientation and on the way in the building she started talking to ticks.  I told her that ticks were not allowed in school.  I knew she was going to use them to ignore everything they said to her.  That was the first time we ever restricted ticks.  They were not ever allowed in school.  The next restriction we made was in public.  Ticks are not allowed in public.  You can interact with us, or with the people around you but not your hands as we walk through the store, zoo, etc.  Basically we allowed them in the car and at home and let me tell you...after a long day of school she would plant her butt in the car and out they'd come.  She'd often say "I missed you!" and I'd have to pull her away from them to say goodbye to her para. 

As time has gone on these have become a problem.  She was literally with them every single second of her day that she could.  It was ALL SHE EVER DID.  When she wasn't with them she worried about when she would be with them again.  If friends came to our house we had to remind her that we have friends to play with and we don't need ticks when friends are over, but it would never fail that real people didn't provide what she needed and the ticks would be back out.

I could see it was a problem but I was really lost as to what to do about it.  It was obvious they were more important to her than anything. At one point someone suggested to me that she might be schizophrenic.  I remember the night that I put her to bed and said "Oksana when you talk to ticks do they talk back to you?"  That's a conversation I never thought I'd have with one of my kids.  You can imagine my relief when she said no.

A few months ago this kind of came to a head.  We were outside playing and Oksana accidentally tripped Anya.  Anya was hurt but it was an accident that only needed an apology and a check to see if she was OK.  Instead Oksana walked past her as if she had never seen her and didn't hear her crying.  I stopped her and reminded her that she needed to come back and apologize and she glared at me and said "BUT I'M TALKING TO MY TICKS!"  That was it....we just couldn't continue to go on like that.  Rather than getting better she was getting sucked deeper and deeper into them.  Larry and I made the decision to limit them.  She could only talk to them for 1 hour a day, 30 minutes in the morning and 30 minutes at night.  Her response was "But they will miss me!"  I assured her that since they were not real they had no ability to miss her.

When all of the poop stuff started we restricted them even more and now we have completely taken them away.  I have no idea if this was the right thing or not.  I catch her talking to "someone" at least once a day and have to remind her that we don't talk to people who aren't there.  She gets very angry when I catch her and often lies and tells me she was talking to me or someone else in the room.  She's found ways to get around this by using puppets or dolls and I'm fine with that.  There's a fine line between imagination and mental illness and I'm trying my hardest to find it and not cross it in either direction. 

I still struggle daily with whether or not I did the right thing but let me share this with you.  She is now playing with toys (even if she is talking with them at least it is more appropriate), she is more engaged with us, she even hurt Anya the other day and immediately stopped to apologize and check on her.  She's also far more bored and sometimes fills time stimming on a ball which is a bit of another issue.  We've suspected that the ticks were a stim of sorts and I think that has been confirmed but it is much easier to redirect her from the ball.

And in the end I will just say that parenting kids who come from trauma is HARD.  I fail constantly.  Sometimes I feel like I'm floundering trying to figure this out and do the right thing for her but I won't give up.  Most people wouldn't do this but I'm committed to her even if in the end I end up in a padded room talking to my hands ;).....