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!

I was never a big fan of roller coasters

Up and down, and up and down, and round and round.  This has bee life recently with Oksana.  Last I posted I had realized that I had made a mistake in her meds and she was not getting the amount she was supposed to.  Can you imagine my relief when I realized what a simple fix it would be for the behaviors I had been seeing to disappear?  She had been on the same dose of her mood stabilizer for 8 months and had experienced great stability.  When I realized our mistake I knew that going back up to her normal dose would bring that stability back. 

I was wrong.

We went back to her normal dose on a Monday night after realizing our mistake.  While we waited for things to get better I watched them get worse....or maybe it was the same but just felt worse.  Her behaviors were disturbing.  Without hashing it all out here I will say that things had escalated to the point that her therapist became extremely concerned.  For the first time ever we had to put a baby gate in front of her door while she slept because we needed to hear if she tried to get up since we couldn't trust what she would do.  At this point the biggest fear is what we will see when puberty hits and she is bigger and stronger.  Right now I can handle her physically, but she is rather tall and it won't be long before she is taller than me.  Her therapist had us put a safety plan in place so that when we need it we have it.  For example, we had to consider how to keep the kids safe.  We  now have a code word and when we say it the boys know that means that they are to take Anya downstairs and not come back up until we say they can. 

We did another increase of her mood stabilizer on Tuesday evening and by Friday we had a different child.  She is happy, playful, and she can handle correction without becoming violent.  I hope this is the beginning of a good stretch of stability again. 

We are still learning and still very early in the life of a family living with mental illness.  I'm learning that this is the roller coaster with no end.  I'm also learning to truly enjoy the stability and to understand that the behaviors that come with instability are not a reflection of who Oksana is but rather the influence of her illness.  That has really helped us to love her through some rough behaviors and not take offense to what she says or does.  That is easier said than done but we are learning!

OOOOPS!

You will not believe what I did.  Back when Oksana was first put on Trileptal she was on 300mg twice a day.  Well the next day she was knocked out so I called the doctor and we cut the dose in half.  I would just take a 300mg pill and cut it in half to give her 150 in the morning and 150 at night.  When Oksana started going to respite we had a problem because our script still said to take 2 300mg pills a day and the respite center can not give meds any differently than what the bottle says without a note from the doctor.  So I did get a note and in the mean time I also contacted the doctor and the pharmacy and asked them to change the bottle so that it reflected the accurate script.  It was no problem and the bottle was changed to say take 1/2 in the morning and 1/2 at night....perfect. 

Well back in July I noticed that I had 0 refills.  I called the pharmacy and they called the doctor for a new script.  When I picked up the bottle I realized that it said to take 1 pill twice a day again.  I was already home so I just made a mental note to ask them yet again to get it fixed, but I never did really get around to it.  I just kept giving her 1/2 in the morning and 1/2 at night. 

On Monday we had an appointment with Oksana's psychiatrist.  The nurse asked us if all of her meds were correct that they had on file.  I told her that we were having trouble getting the script right on her Trileptal.  The nurse turned her computer screen around and I saw "take 1 twice daily" and I started to tell her that was wrong but before I even got it out of my mouth I looked again and said "Does that say 150mg?"  Sure enough it did so I immediately called Larry and told him to get her bottle and tell me how many mg the pills were.  They were 150.  Oh my.  I did not realize what they had done and I had been giving her half of the 150mg tablets and not the 300mg tablets!  Well now, that explains a WHOLE lot!

Her psych got a good laugh out of my mistake.  I just keep telling myself that at least I was giving her too little and not too much!

Catching up

I said I would update again after school started.  My intention was to do that within the first week and then life happened.  Technically this is still after school started, right?!  I'm going to bullet point some stuff to make it easier:

-Back to school for Oksana has been up and down.  It is MUCH better than last year so I'm not complaining.  She has rough days and good days, rough moments and good moments.  Overall she fell back in place as well as I could have hoped for.  She's with the same incredible teacher and 2 really awesome paras.  She is set up for success as far as what the school is doing for her.

-Anya fell back into place as if she never left.  She also has the same teacher.  Her para from last year is with her 1/2 day now and her other para was in her room last year and was with her in summer school so they are both very familiar and comfortable with each other.  Anya's biggest problem is that she uses to much of her energy to be naughty.  Besides that she is so smart and really thriving in school.

FIRST DAY OF SCHOOL

-Clayton and Evan had work to do at home last week but they start at their homeschool program on Tuesday.  I think we all have mixed feelings about it.  It will be really good to be back in a routine but being in 10th and 7th grade makes for a full and challenging year.  I know they are up to the task but it will take some time to get in the groove again.

-Larry and Clayton have been gone since last Saturday on a mission trip to Honduras.  They fly back in at 10:00 tonight!  We are so excited to see them and hear all about their trip. 

-Oksana's therapist finally just came right out and told me that she thinks Oksana has schizophrenia.  Of course she still doesn't have the diagnosis and she could be wrong but all of the indicators point to that.  When asked how I felt about that my response was "relieved".  I know that is an odd response but I knew she had it and it was a relief to hear someone else confirm it so I could stop thinking I was crazy.

-I'm wondering if we might have a med increase coming for Oksana.  She has been very stable since January.  It has been an incredible blessing but we all know that it won't last forever.  There have been a handful of times since January when the frequency of her aggressive behavior has increased for a period of time and we would think this might be the end of the stability but she always seems to bounce back and we keep moving on.  Recently I've been concerned with an increase in the intensity of her aggression.  We haven't seen that since her stability.  For some strange reason I have never been a big target for Oksana's aggression.   She was verbally aggressive to me and would be physically aggressive but usually only if I had to physically remove her from a situation.  Recently she has taken to attacking me whenever I say no to something she wants.  She will go after me to attack me and then she will grab at me, rip at my clothes, scratch my face, pull my hair as hard as she can to try to rip it out, and has threatened to bite me but couldn't get me.  These are things she commonly does to the staff at school but not me.  We are keeping a close eye on her to see if this continues.  Her therapist is aware and we see her psychiatrist in just over a week.  On Friday I am meeting with our regional center worker to talk about Larry and I being trained in restraint.  She is tall and it won't be long before she will be bigger than me.  If I can't control her when she tries to hurt me then I will have to call the police.  We are trying to avoid that if at all possible and learn ways to restrain her that keep us all safe.  The training is also a layer of protection if she ever tells the wrong person in the wrong way that we restrained her.

-I finished Anya's Halloween costume!  I haven't started Oksana's yet but I am thrilled with it! 

 

This is her in the dress before I finished it off with the snowflakes.  At Halloween she will wear a long sleeve white shirt under it.  Oksana's costume will be identical.

I think that about sums it up for now!  I'm off to get my boys from the airport!

One More Week!

We are officially at the one week mark to the start of school!  Things are wrapping up nicely over here and we are excited for what we hope will be a great school year!  This is going to be a bit of a random post because I just have some end of summer stuff to share.

Yesterday we did what ended up being one of our favorite activities of the summer.  Too bad we didn't do it earlier!  I got a plastic tablecloth, put it in my front yard, covered it in shaving cream, and stuck the girls on it!  If I did it again I would not use the tablecloth.  Every time the girls moved it moved with them.  Even rocks in the corners didn't keep it still for long.  I'd prefer a tarp well strapped to the ground.  You can see that didn't stop their fun!

 

 

 

This year I decided I wanted to do a little something for the girls' special ed teachers as a welcome back to school gift.  I only chose the two teachers because I know them well and truly, truly appreciate all that they have done for our girls.  I would have loved to have done more, but I just don't have the money, and this allowed me to make their gift a little nicer.  I did a little kit that has all kinds of things in it that they may need during the school year but won't have on hand.  I got a small Rubbermaid container and filled it with a tissue pack, hand sanitizer, sharpies, a tide stain stick, tic tacs, post it notes, clips, Airborne vitamin c thingy (I'm sure that's not it's official name), a lint roller, protein bar, wet ones, and tape.  I think they turned out really cute!

In other news, Evan got an incredible opportunity last week.  He has such a passion for riding and jumping horses.  He's been riding for 3 years now and he is at the point where in order to progress he just needs to be on a horse more.  I talked to his instructor about options to move him forward in this sport.  Two of the three options involved money we just do not have.  I emailed his instructor and the owner of the barn to tell them that we do not have the money to do some of what they were suggesting.  We live on a ministry salary and are in quite a bit of debt from Anya's adoption.  The last option they gave us was for him to volunteer at the barn on Saturday mornings in order to earn ride time.  That we could do!  Every Saturday Evan heads to the barn for a few hours where he grooms horses, helps beginner classes tack and untack for their lessons, and really any thing else they might possibly need him to do.  In exchange he gets to spend time riding a horse that needs to be ridden that day.  He absolutely loves it.  However, that isn't the incredible opportunity.  We got a call a couple of weeks ago telling us that they had an extra spot in one of their horse camps.  They would love for Evan to join them for free!!!  This is almost a $500 camp!  We were so excited.  They said he is one of their favorites and they know that he would benefit greatly from coming.  I was so touched!  Here is a video I took of him riding just this week at his lesson.

Don't leave me yet!  I have more tidbits :).  In a last minute opportunity, Larry and Clayton will be traveling to Honduras on a mission trip!  They are leaving August 23 and they will be gone for a week.  This is the ministry they will be working with is called Project Manuelito, www.projectmanuelito.org.  Calvary has had a partnership with Project Manuelito for many years now.  Their team will be doing a variety of construction projects, ministering to the kids, and the main reason these two are going is because Larry is going to do a video project for Project Manuelito and Clayton will help him.  This is WAAAAYYY outside of Clayton's comfort zone, but I know it will be an incredible experience.  We got his passport and he is currently raising the $1500 needed to go on the trip.  He is at $1000!  This has also been a great experience for him to see God's faithfulness to provide for his needs :).

I wanted to give a quick update on my last post about the woman I met through my dental hygienist.  We met for dinner on Friday and had a wonderful time!  We talked non stop for 4 hours straight!  We are hoping to do this on a regular basis.  That meeting was a wonderful gift from God that I've been praying about for a year now!

Last thing, and this is totally random but kind of fun, I am making the girls' Halloween costumes this year.  Let me start this by saying that the amount of craftiness in my body could fit in my pinky toe and still have room left over!  Here's the thing.  Anya especially, but also Oksana, is on a BIG Frozen kick.  It took a little longer than most kids but Let it Go is now being sung in my house like it is in millions of other homes around the world!  As I started looking around I realized that anything Frozen is flying off of shelves before the stores can even get them all out!  I had no desire to run to 500 different stores trying to find an overpriced and cheaply made Elsa costume this year.  The problem is I can't sew.  As I was looking around thinking that maybe I could get someone else to make me one I found a no sew option that I think will be so cute!  I've been pricing materials, and watching tutorials like crazy.  As soon as I have everything together I'm going to jump in and pray this works!  Here is a basic idea of what I am doing but it will be slightly different because there are things I saw on other dresses that I want to change or add to it.

OK I think that might finally be all I have to say.  If I don't update before next week I will let you know how the first day of school goes for sure.  If you remember, last year was awful.  It was a huge adjustment for Anya and the day that Oksana had one of her most severe outbursts ever.  Anya is 100% ready to go back.  She loves her class, she loves her teachers and paras, and very little is changing for her at all.  This is going to be a huge year of growth for her.  I have high hopes for Oksana as well.  Last year she had a new teacher and a new classroom, not to mention the fact that she was very unstable.  With the overall stability of the summer (minus the summer school incidents), and the fact that she is also going into a very familiar situation with little changes I think she should transition much better.  I'm meeting with her teacher on Friday to discuss what happened at summer school so she can be aware of what I believe caused that to be unsuccessful for her. My dad and step mom are visiting next week too so it should be a full and fun week!