Pictures

I had hoped to get this post up earlier but it has been a hard couple of weeks. I called psych yesterday and we had to increase her meds, but I promised a fun post with pictures so I'm not going to talk about that right now.

One of our favorite events each year is a horse show at the barn where Evan rides.  It is called the Spooktacular and besides a competition each person gets to dress up themselves and a horse for a costume contest.  Sometimes when we are pulling out of the parking lot after the event Evan is already talking about his next costume.  His horse was kind of a stinker at this show.  He spooks at a lot of things and was kind of freaked out by the whole thing.  Evan knows him well though so he did his best with him and they did get one really good course in.  He got a first, second, third, and fourth place.  His costume was the 11th doctor and the TARDIS :).

Last weekend we went to a pumpkin patch.  Pumpkin carving happens tomorrow night so I'm sure I will have more pictures!  We found a small pumpkin patch that was not at all crowded.  It didn't have all of the bells and whistles of the bigger ones but it was free and it was fun....good enough for me!

Today was the 50th day of school so all of the first graders came dressed in clothes from the 50s.  I found this great idea on Pinterest to turn a pair of white canvas shoes into saddle oxfords using a sharpie!  I think she looked adorable!

 

 

 

OK I'm off to hang out with my family.  I'll update with pictures again soon and at some point I need to fill you in on Oksana. 

A question that needs its own post

Would you adopt her over again?

You would be surprised how often I get this question.  Many people are also surprised we have not disrupted.  I've been pondering how to answer this because it brings up a lot of emotions for me.  I think I will first say that there have been times...primarily when she first came home and when she really went downhill 2 summers ago....that I could have easily said no.  Those were some of the darkest days I have ever experienced.  I don't know  how many of you reading this are Christians but there have been 2 times in my life when I knew without a doubt that God was asking us to do something really, really hard. This was one of them. To say no would have been direct disobedience and that is not an option for us.  So I can say with confidence that I know she was chosen to be our daughter.  No matter how hard it is, we know without a doubt that it is our calling to parent Oksana.  She is a part of our family just as much as every single other member and no matter what the future holds for her she will always have us.  Though this has been hard she has brought us joy in many ways:

- Oksana finds pleasure in the simplest things in life.  She reminds us to be thankful for the small things.
- Oksana is sweet and funny.  She loves to laugh.
-  Because of Oksana we are different people.  We are more compassionate, more patient, and more aware of the hurt that some people carry.  We are more willing to step into someone's life and encourage them because we have suffered alone and we know how hard that is.
- Oksana is determined and she inspires us.
- Oksana is girly in ever sense of the definition.  After having 2 boys she brought some serious bling into our house!  The more it shines and the brighter the pink the better!
- Oksana has taught our boys more than any other person in their life.  They will be better people because Oksana is their sister.
- Oksana has shown us that we are stronger than we ever thought we were. 
-  And I think the thing Oksana does that is more important than any of them is she taught me what love is.  Let me tell you...it is really easy to love someone who is lovable.  Love takes on a whole new meaning when you have to love someone who hurts you.  I've never asked for easy in my walk with the Lord, I've asked Him to use me and transform me.  He felt this was what I needed to understand love so would I do it again?  MOST DEFINITELY!

Now, you know I am trying hard to be transparent here so I want to say that while what I just wrote is a lovely sentiment, and every single bit of it is true, it doesn't in any way discount the pain of what we have been through.  Now I want to share with you a few of the ways our life has changed recently in comparison to the lives of other families. 

-While most mothers are finding cute hair styles for their girls, I am wondering if she will rip her hair out that day.
-While most couples are redecorating their kitchen for a new look, we are rearranging our kitchen so that our knives are locked up and out of her reach.
- While most families have a number code that gets them in their garage, we have a code word that tells the boys to remove Anya from the situation and keep her downstairs so she is safe.
- While most families watch their babies on monitors and then sell them when they grow, we are having cameras installed throughout our house to monitor her and keep us safe.
- While other families go to classes to learn the newest parenting techniques, we are being trained in how to safely restrain our daughter so that she can't hurt us and we can reduce the chance that we would need to call the police.
- While other families never consider that they will need a police officer, we have red flagged our house to let them know that we have an aggressive child and we need a CIT officer if we call. (A CIT officer has had 40 hours of training in dealing with the mentally ill).
-  While other families have safety plans in place to protect them from fire or tornado, we have safety plans in place to protect us from Oksana.

This is not a pity party, it is reality.  I've had my time of mourning, and it pops up again for short periods of time here and there, but we know this is our reality and we accept it.  Being this honest is hard and I did run this by Larry before I posted it.  I think for me, more than anything, I don't want you to fear mental illness or fear my daughter.  She is amazing.  When she is unstable we are careful where we take her and what we do with her.  We protect her as much as we protect everyone else.  The things we are doing are not because we are scared of her.  They are because we want to help her in every possible way that we can to be successful.  It is far better to be over cautious and never need it than the other way around.  I hope that answers your question.  Actually, it might be more than you ever bargained for ;)!

Next time I promise I will post something with pictures so you don't have to listen to me ramble :).

Questions Answered Part 2

I have a couple more questions to answer and then I'll probably blog again soon.  There is a lot of stuff running through my head.  On top of that I have a parent teacher conference for Anya tonight, and I'm considering calling the psychiatrist for Oksana because she has had a rough week.  She sees her therapist this afternoon so I'm going to get her thoughts on it.

Thanks for ansawering my question. I find it really interesting how Oksana (and other children like her) can have some skills so much higher than other. How are the girls self help skills? Do they need special equipment (different cups etc) to help at mealtimes?

I feel overall pretty good about their self help skills.  Both girls are independent in the bathroom except for wiping after a bowel movement.  Both girls independently undress themselves.  Anya, who loves to be undressed is especially proficient and can have everything off in about 2 seconds flat!  Oksana struggles and takes a long time but she does it completely independently.  Both girls need some minor assistance getting dressed.  90% of the time the assistance involves having the clothing on correctly and not backwards.  Both girls eat independently but we do use some special equipment.  Anya has minimal trouble eating.  Her biggest problem is that she won't sit still and focus on eating.  Oksana has a lot of trouble.  It literally looks like her food exploded all over her and our table when she eats.  Sometimes it is hard to even eat next to her because you can lose your appetite just watching her.  We have done everything possible to help her.  She has a special chair, special plates and bowls, special silverware, etc.  She has had feeding therapy in OT, we have used oral sensory items before she eats, we have used mirrors to help her see what she is doing.  The results have been minimal.  Her OT finally told us that she has everything she needs to eat without food being literally everywhere.  There is no physical barrier to her ability to eat, and it really boils down to the fact that when she cares she will do better.  That's rather frustrating, but for now we are just doing our best to continue to remind her of her skills and encourage her in them.

I had a question last time about the girls' verbal skills so I took a couple of videos to give some examples.  I couldn't get them imbedded in this post so you have links.  The videos are not cooperating with me today!

Anya Video

Oksana Video

 

Finally I just want to say thank you to "impatient patient" for your comment.  I truly appreciate the encouragement :).

Questions answered

Thank you so much for your great questions!  I tried my best to answer them as thoroughly and honestly as possible.  I'm always open to questions so feel free to continue to ask them or let me know if you want me to clarify anything.

I don't know if you've addressed it before, but would you possibly be willing to talk about what you do when you get discouraged?

This is a great question because a year ago I couldn't have answered it.  I was so buried in discouragement and grief that I couldn't even see clearly enough to figure out how to get myself out.  It's been a long process of healing and learning to take care of myself that has helped me to battle discouragement.  There is no one thing that works for me but it is a combination of many:

-Talking - this includes talking to my husband, my family, my NAMI support group, friends on the phone, setting up lunch dates, talking to people I've gotten to know through Facebook who are in similar situations (what did we do before private Facebook groups?!), talking to my therapist (a necessity for any parent of a child with mental illness, in my opinion), etc.  I am a verbal processor.  I need to talk through stuff to help make sense of it.

-Running - Back around February I started running.  I have never ever been a fan of running but I couldn't afford to join any classes and I needed to do something active since I know that it can help with mood.  I have ended up really enjoying it.  I get out as often as I can in a week.  Summer was rough because the girls were home all day but now that they are back in school and the mornings are cool and beautiful I have been thoroughly enjoying my run time.  It helps me clear my head.  I can think through things, pray (which goes along with talking too), and listen to a sermon I missed at church or our local Christian radio station.  I feel strong after I run and it has been good for me to battle discouragement and yucky moods in general.

-Respite - This can look different at different times.  Sometimes just stepping away for awhile is helpful.  I have not left Oksana over night since January which was a big huge disaster.  She does great at her respite program though which takes her a minimum of one weekend every other month.  Otherwise I go out with my husband after the girls are in bed or meet with a friend to just get a way and breathe.

-Education- This is huge for me.  Education is knowledge and knowledge is power.  This is very true with mental illness.  Through reading books, attending NAMI classes, watching videos, talking to people, etc. I have learned SO much about mental illness.  The more I understand Oksana the less I am discouraged and the more I learn about other people surviving similar struggles the more I feel encouraged. 

I hope that answers your question :).

 I would be interested to know more about the girls development particuarly communication, what sort of level are they at? And although you talk about Oksana's schooling you haven't mentioned Anya's for awhile (or ive just missed it!)

First I'll address Anya's school situation.  Right now she is sort of in 3 different classes which is kind of funny but working really well.  Her primary class is her special ed class.  This is the same class she was in last year.  Her teacher is UH-MAZING.  She has a para with her all day and her paras adore her.  In this class there are 8ish kids.  4 of them have Down Syndrome.  It's really a cool class with an amazing group of teachers and kids.  She does much of her learning here.  Her second class is her regular ed 1st grade class.  This is where she goes in the morning to start her day and she does class parties with them, etc.  They learn well above her level so she isn't in there much.  However, her third class is a kindergarten class.  This is sort of unusual but her teacher noticed that much of what they are doing in kindergarten Anya can do.  So on a whim she talked to a teacher who welcomed the chance to have Anya join her class for some of their lessons and now she often does her math and occasionally other subjects in there too.  She just started reading recently and is really blowing our minds.  Last year was a big transition year for her but this year she is knocking out goals faster than we can make them.  She's really something.

Anya has about 400 signs and is rather verbal now.  She can be difficult to understand so often if she can pair her words with a sign it helps us quite a bit.  Quite a difference from the non verbal kiddo we brought home!  I still recall the words of the orphanage social worker who said "She has such potential but we have reached the limit of what we can do for her".  We had no idea the depth of that potential.  She is amazing.

Communication is Oksana's strong point.  Most people have no idea of the level of her intellectual disability because her verbal skills are pretty incredible.  This has it's good points and bad because she uses those verbal skills to her full advantage when she is mad.  Her developmental level is all over the board.  It's like she has 2 intelligences.  When she is interested in something she can learn details that most kids her age don't know.  She loves all things medical right now.  She can tell you what dialysis is, what arthritis is, what many types of mental health diagnoses mean, etc.  On the other hand she can't spell her name and she can't count past 12.  Anya is surpassing her in her educational level. 

Some things I'd like to know about are: what is Oksana's level of self-awareness like? I remember you referencing that she asked the pdoc if it was time to "talk about my brain" - is there more of this?

Do you feel comfortable sharing more information about how Oksana views her own adoption? For example, does she identify with Anya based on being a fellow Eastern-European-Adoptee? Are there things that having an adopted sister bring out about the trauma Oksana faced or memories she might have of living in an orphanage? Of course, a lot of that is her story to tell, so I hope I am not crossing a line when asking. Does Oksana know that in her short life she has faced a lot more trauma than most, or does she not really realize the depth of her own experiences?

I'll start with the self awareness question.  It goes hand in hand with what I said above about her level of intelligence about certain things.  She is very aware of her diagnoses.  She knows what they mean and can articulate that.  We taught her about bipolar because she is able to help us understand her moods and she is able to understand when we explain why she feels the way she does.   I wanted to get a video of her talking about some of these things last night but she had a very rough night.  I'll try to get one up soon though.

Regarding the adoption.  Oksana understands that there is a lady who carried her in her belly.  That lady couldn't keep her and we aren't sure why.  She knows that she was sent to an orphanage and she knows all about how we found her and came to get her.  Since she was 5 she still remembers a fair amount of that time. 

It's interesting that from day one Oksana accepted Anya far better than we ever expected her to.  She has never mentioned the connection that they are both adopted but I've always suspected that she related to Anya on some level because of that.  The most trauma I saw related to Anya is when we went to Bulgaria to meet Anya.  Oksana was such a mess that we ended up having Anya escorted home.  I think that really helped in getting them started on the right foot. 

I do not think Oksana has any idea of the depth of what she has faced or that it is any different from anyone else.  She just recently figured out that not everyone goes to an orphanage.  She has also blocked out a lot of her early experiences.  She really just doesn't talk about it a whole lot.

I would be curious how Oskana's mental health issues have effected you and your husband. Has it placed any strain on your relationship? Do you agree on the methods used to help her? How about other relationships outside the family? How have people accepted Oskana?

Great question.  Larry and I have certainly had our ups and downs like any couple but we have been very blessed to have an incredibly strong marriage.  I really believe that having a child with mental illness will either tear you apart or bring you closer together.  We have definitely been drawn closer together through this.  Our individual stress has been HIGH, but being together is what gets us through.  We have been able to agree on what we need to do to help her mostly because we were both so clueless going into this that we have learned and grown together in our understanding of mental illness and how to deal with it.  We have an incredibly support system that has been a huge help to us.  Relationships outside the family are interesting.  We don't really run around telling people the depth of what we deal with so some people know that we struggle but don't understand how bad it is.  My mom is one who has seen her other side and it honestly did damage their relationship.  Not on Oksana's part.  She thinks everything is fine but my mom is more leery of her and reserved in her love towards her.  That's the downfall of hurting people over and over again.  We don't stop loving her at all but it does put a dent in a relationship.  My in laws know the basics but I just had a talk with my mother in law last night and told her that we want to have dinner with them one night to tell them everything that is going on.  They have never seen her at her worst and we don't want them shocked if the day comes that we will have to hospitalize her.  Overall people have really accepted Oksana extremely well and I think a lot of that is because they knew her pre-bipolar and so the Oksana they  know is sweet, cheerful, and loving.  She is still primarily that way around most people so 95% of people have no idea what her other side looks like.  Even one of my dearest friends told me that she believes every single thing I say about what Oksana does but her brain has such a hard time putting that with the child that she knows.  She really is an awesome kid when she isn't under the influence of her illness.

I stumbled upon your blog when you did an article for ellenstumbo.com. I can't find the title at the moment but i think you were talking about isolation from friends because of the constant supervision your girls need. I really appreciated that article..the reality of what we deal with as special needs parents. Others just don't understand most of the time. I am always blessed when i stumble upon articles that deal with those realities...how caring for our kids with special needs affect every part of our lives. I don't really have others to discuss these things with so when i can read things that helps a little. Thank you for sharing on your blog. I pray for your family when i read your posts.

Even though there wasn't a question here I just wanted to say thank you for your comment!.  I'm not someone who ever desires to have a blog with a huge following so I tease Ellen every time she posts that on facebook that she is giving me an ulcer. ;)

Questions

Sometimes I struggle with what to write here.  It's not for lack of material but more about wondering what is relevant to my readers and what isn't.  I also factor in how much I'm willing to share in a public blog.  Often that is what keeps me from blogging regularly. 

Because of that, I'm asking you to throw some ideas out at me.  Do you have any questions?  Anything you haven't seen me address in awhile and want to know more about?  I'm open to anything.  Throw something at me :).

Siblings and Mental Illness

I was asked to speak a bit about how my boys handle Oksana.  I'll start this by saying that there are so many factors that determine how a child (or adult) will respond to a sibling's mental illness.  Things have gone well here in that regard, but many families struggle terribly with this.  I suppose it is the same in the adoption community.  Some siblings embrace their new siblings and some struggle.  This is just our story.

I'll start at the beginning.  Our boys were very much on board when it came to our adoption.  We had been discussing adoption for awhile.  When we found Oksana it wasn't a new concept to them, and they were happy to just have a face to put with their new sibling.  When we met her we were very concerned that she was not at all what they were going to expect.  Of course we knew that she had special needs, but even on those first visits we had the sense that there was way more going on than we had realized.  We did our best to prepare the boys for what they might see.  We also made the decision to put a lock on their bedroom door.  We wanted to be sure that the boys had a place to go to escape, keep their stuff safe, have some peace, etc.  I really believe that was a huge thing for them in accepting Oksana.  Quite honestly they accepted her far faster than we did.  It's quite different when you can go lock yourself in a room when she starts up.  We didn't have that option. 

So now we will fast forward.  When Oksana was first diagnosed we sat them down and talked to them about mental illness and specifically what they were seeing in her and why.  The boys are doing fine with her.  I think it helps to understand it better and know that she is ill and not just mean.  They still have a safe place.  In this house their rooms are in the basement and she can't get down there.  When she starts up their attitude is more like "There she goes again", or my personal favorite, "Mom, did you remember her meds today?"  I can see her definitely start to wear on them sometimes.  Evan, being the younger of the two, is often a target for her if she wants to start a fight.  We've had to work hard on teaching him to completely ignore her and not engage.  Because of that he can only tolerate her for so long, especially when she is unstable.  She has not yet focused her aggression at them, but I think it's because they make themselves scarce when she starts up. 

More recently things have been ramped up a bit in her behavior.  Evan got to witness her being physically aggressive to her for the first time about a month ago.  During the incident I actually smiled at him to show him that I was in complete control and not scared.  I talked to him later about it and he seemed OK.  A couple of weeks ago we sat them down to create a safety plan for our family.  We talked about a lot of scary things that could potentially happen but more than anything there is one thing I wanted them to hear from me.  I held up one hand and I said "This is Oksana."  Then I held up the other hand and said "This is her illness."  I then told them that Oksana is funny, sweet, and joyful.  Her illness makes her violent, mean, and hurtful but that is NOT Oksana, it is Oksana under the influence of her illness.  I wanted them to know that she is still the awesome person we know even when she is unstable because it is really hard to see sometimes when we are in the midst of the worst of it.

I'll address Anya briefly too.  She has absolutely no idea what is going on and is often confused by Oksana's behaviors.  Unfortunately, she then wants to get close to her to see what in the world is going on.  She also mimics things she sees Oksana do.  One day she got too close to Oksana during an incident and got her hair yanked.  After that she spent a week or two yanking her own hair and even her grandmas.  Now we have the code word so we can easily have Anya removed from the situation and safe.

For the record, Oksana has been great since her last med increase.  We have definitely been dealing with irritability and sassiness, but the aggression has not been a problem at all.  Now I'll enjoy it until the next period of instability!