Schizophrenia?

I wanted to give a quick update on Oksana's last visit to the psychiatrist.  She had spoken with Oksana's therapist before we met so she had a good idea of what we are dealing with.  No one doubts at this point that Oksana is having regular auditory and visual hallucinations.  I also brought her a document with a list of things we had experienced regarding Oksana's mental health since seeing her last.  As we started talking I told her that as she could probably imagine my fear is schizophrenia or schizoaffective disorder.  I thought her answer was a good one.  She said that Oksana fits all of the diagnostic criteria for bipolar.  The diagnostic criteria for schizophrenia is delusions, hallucinations, etc. that are present for at least 6 months and impair a person's ability to function in life.  She said that if Oksana had a known family history of schizophrenia we could be pretty confident that's what we are dealing with but since we don't know her family history we will continue to monitor her.  She said that she would rather diagnose up than down.  In other words, better to hold off on a diagnosis until we know for sure than to give it to her now and have to say 15 years later we were wrong.

I pointed out to her that we are dealing with medicated symptoms.  How do we know what is really under all of her meds, and how do we get an accurate diagnosis without knowing?  She agreed that without medication she would very likely meet the diagnostic criteria but she said that her medication will not provide the good results we are seeing now forever.  Eventually she will grow and the dose she is on will not be enough, at which point we will get breakthrough behaviors and we will take data off of those. 

She pointed out that her meds are in a very good place right now so we aren't changing a thing and that giving her a schizophrenia diagnosis makes no difference in our treatment plan.  I asked her if it made a difference for insurance.  For example, if she needs inpatient psychiatric care at some point will insurance pay for more days if she has a schizophrenia diagnosis.  She said insurance pays based on symptoms not diagnosis so even there we are fine.

With all of that she also made the comment "I believe her diagnosis will change in time."  Our guts all say this kiddo is schizophrenic but there's no rush at this point to call it that.  We are just dealing with whatever symptoms we have.

I was very pleased with this visit.  We had been going every 2 months but this time we are going 3 months because she really wants to see her after the transition back to school.  I don't know how specific I was on here about Oksana's first day of school last year.  I know I mentioned it was bad but let me assure you that bad doesn't begin to describe it.  She displayed violence that shocked all of us.  Even after the horrible summer we had I didn't see that one coming.  We ended up making an emergency appointment with the psychiatrist, so she is smart to give us a set appointment for that time period.  She said that, of course, if anything changes at all, or I have any concerns I can call any time and she will fit me in.  We are so incredibly blessed to have this woman supporting our family.

Besides all of that Oksana is doing rather well.  She hasn't been without incident, but it is NOTHING like last summer.  So far so good!  We are talking to her quite a bit more about her mental illness.  She hears us talking to doctors and therapists all the time.  No sense anymore in hiding what the word bipolar means or anything else that we know for sure she is dealing with.  She has no problems telling a doctor that she sees things that the rest of us don't see.  She went to school and told her para that mom goes to NAMI meetings.  She isn't ashamed of it at all, nor should she be.  However, I did suggest that she use some discretion in sharing every detail of her mental illness so she is aware that the grocery clerk doesn't need to know she has bipolar ;). 

Funny how just a year ago if I had to write this email I'd be an absolute mess, and now I write like it's just normal.  Well, I guess it is now.....it's our normal.  What can I say?

Family Retreat part 2

DAY 4

Breakfast again.....have I mentioned how good the food is?  ;)  They had this baked oatmeal that was like heaven.  I've never even heard of baked oatmeal before this weekend but my first thought on our first morning back home was "Oh man...I don't get to have baked oatmeal!" 

Same routine in the morning.  Split up, worship, teaching, small groups.

We came back together for lunch and then had free time.  This is the day Oksana had been waiting for.  The one thing she wanted to do was go horseback riding.  It rained all morning and I thought for sure it would be cancelled but the skies cleared and 5 minutes before she was to ride they made the decision to move forward!  Anya rode a horse once about a year ago and hated it so I didn't even sign her up.  They encouraged us to give it a try anyway.  Her STM rode with her and she LOVED it!  They let both girls go twice since they were having so much fun!

After horses we went to do boats.  There were many choices.  You could kayak, canoe, go tubing, ride a pontoon boat, etc.  Evan and I went kayaking while everyone waited for the pontoon boat and then we all went for a beautiful ride.  The kids all got to take a turn driving the boat!

I'll point out here that we had hardly seen our boys until Evan decided to join us for boats.  They were off having a blast with the sibs.  They pretty much spent as much time with them as they could.  Evan would pop in to do some activities with us but Clayton found a group of kids that he really clicked with and he had so much fun.  The sib group leader would often meet up with them and sometimes they would discuss the challenges of living with a sibling with a disability or just hang out and play games together.

After dinner the night time activity was date night :).  Moms and dads were given a wonderful dinner and then sat by the pool, went on a boat ride, or just enjoyed the beautiful scenery together.  While we had date night the kids were bouncing in bounce houses, watching movies, and having a blast!

DAY 5

This was our last full day.  After our usual morning routine we met up for lunch and realized that Oksana could barely keep her eyes open.  Lack of sleep is a big trigger for her behaviors and she was having so much fun that she was doing surprisingly well but it was starting to hit her.  We made the decision to go back to our apartment after lunch and take an hour or so to rest.  We didn't make her sleep but she just hung out on the couch with me and relaxed for awhile.  That seemed to perk her up.  Now it was a rather chilly day this day but Oksana still had something on her to do list....swimming.  Oh boy.  It was a heated pool so I agreed to go with her.  Larry thought we were insane!  The pool wasn't extremely warm but at least we weren't freezing; however, when it was time to get out it was absolutely miserable!  Oh well.  We warmed up well and then went to play on the beach for awhile.  Clayton hung out with the sibs, Evan decided to go kayaking again, and then after baths we all went to dinner. 

The evening event on this day was a talent show!  I debated skipping it to put Oksana to bed early but everyone encouraged us to go and I'm so glad we did!  It was really fun.  The girls sang a song with all of the kids that they had been practicing throughout the week.  While all of the kids nicely stood and sang Oksana broke out into interpretive dance and Anya wandered around making her STM chase her :). We also got to see a beautiful girl with DS play the piano, a boy with DS do an awesome dance routine, a sibling sing a song from Frozen, and tons more.  It was a blast. 

After the talent show we put the girls to bed but the boys went to sing karaoke with the sibs.  No, they didn't sing, they just watched but it was fun.


You can see Oksana in the back dancing.
 

DAY 6 - Last day :(

No one in our family wanted to leave!  Truthfully it was time.  Oksana was still exhausted.  She could barely keep her eyes open.  I think it really was the perfect amount of time.  Much more and we would have been all "funned" out :).  Instead we left anxious to go back the next year.  On this day we all had breakfast and then the STMs took the girls to play while we went with the boys to pack up.  We all met up after that for closing ceremony.  At the closing ceremony people could come up and share something about the week that impacted them.  It was so sweet.  Many people came forward but I will always remember the man with DS who cried and thanked his STM over and over and over again, telling him how much he will miss him.  Then there was the young lady who cried and said that so many people here have a disability and it isn't strange.  It was really cool.  After a quick video montage of the week (you could purchase these and, of course, we had to have one) it was time to say good bye.  The boys begged for 10 more minutes to get contact info for the sibs and we loaded the girls up and then cried and cried when we said goodbye to our STMs.  Those young ladies were incredible and they were a big reason we had such a great time. 

The sibs sitting together at closing ceremony.

We were home that night and it definitely felt good to sleep in our own beds.  Now we have started counting down to family retreat 2015 :).

Joni and Friends Family Retreat Part 1

Last week we went to the Joni and Friends Family Retreat.  We had SO MUCH FUN!  We have decided that this will be our family vacation every single year.  Let me tell you a bit about it.  This retreat is designed for any family with a family member that has a disability.  Each person who needs one is paired with a short term missionary (STM).  These are people that have raised money to come to camp on a short term mission trip to serve people and families impacted by disability.  We had an STM assigned to each girl.  Our STMs were with us most of each day giving us an extra set of hands and eyes on the girls.  This allowed us to relax and have fun as well as do some activities that they couldn't or didn't want to do.  The STMs even ate with us so that we could enjoy our meals....and boys did we enjoy them!  The food was amazing!  To top it off there were gluten free options at each meal so I never had to worry about food.  Now THAT is what I call a vacation!  I think the best way to tell you about our trip is just to go day by day.

DAY 1
Technically this day was not at retreat but we drove up to the Chicago area where the Stumbos met us at a hotel to spend an evening together!  We were soooooo excited to see them again.  It's been over a year since we saw them last which is very unusual for us.  Unfortunately with the difficulties we had with Oksana last year we were not able to see them when we normally would have.  That made this visit extra special even if it was extra short!  We swam together, had dinner, ate ice cream, and sat up until 1am talking!  We got adjoining rooms so all we had to do is open a door between us and we could visit easily.  The next morning we had breakfast together, spent a bit more time visiting and then we had to head to Michigan.  We can't wait to see them again!

DAY 2
We arrived at the retreat center to a very warm welcome.  We pulled up to the front and got out of the car to see all of the staff and STMs lining each side of the lobby cheering and blowing bubbles at us as we walked through them.  While we were being welcomed someone took our car to our apartment.  After meeting our STMs (pictures below) we rode a golf cart to our place.  Now, I thought that we would be in something like a hotel room but possibly more rustic.  Boy was I wrong!  I almost jumped for joy when I saw that we were in a 3 bedroom, 2 bathroom apartment!  That made our lives so much easier for the entire week.  I just can't explain how happy I was!  We went to dinner after unpacking and then we had an opening ceremony to welcome everyone.  After that there was an ice cream social.  They had build your own sundaes, sno cones, pop corn, and they had a fire truck and a police car for everyone to see.  It was a fun time to just start to get comfortable and get to know people. 

This is the tabernacle where we had our opening and closing ceremonies as well as all of our teaching and worship.

 

DAY 3
We started with a wonderful breakfast.  After this the STMs took the girls to groups divided by age where they basically did a VBS.  Stories, crafts, games, etc.  The boys went with the teens where they did similar things but much cooler ;).  Larry and I went to the tabernacle for worship and a teaching time with our retreat pastor.  After that we were broken into small groups.  I was with about 5 other women and Larry was with a group of men.  We had time to get to know each other, discuss the teaching, and share prayer requests.  After small groups we went to lunch.  This is the only day we had lunch separate.  The women, men, and children all had separate lunches to allow us more time to visit and get to know each other. 

After lunch was free time.  There were so many activities to choose from!!!  The STMs came with us to help us with the girls but we found a time each day to give them about an hour long break.  On this day we went to the beach of Lake Michigan and got to zip line!  The water in the lake was absolutely freezing so we just put our toes in it and played in the sand!  Anya wasn't going to zip line so her STM stayed at the beach with her and she had a blast digging holes in the sand!  Here is my first experience with how amazing  this retreat was.  Everything was adapted so even Oksana got to zip line!  I couldn't believe she wanted to do it but she did so they made every possible accommodation to allow her to do it.  They put her in a full body harness and lifted her to the top of the tower since she couldn't climb it.  It was so cool!  She absolutely LOVED the zip line.  I was the only one who didn't go because I wore flip flops and needed closed toe shoes.  I will be sure to be ready next year!

After free time we went back to the room and got washed up for dinner and then it was western night.  When I first heard about this I have to admit that I wasn't too sure about it but it was a blast!  They had a petting zoo, pony rides, hay rides, dancing, and apple pie with vanilla ice cream!! 

 

This is getting long so I'm going to tell you one more thing about day 3 and then I'll do the rest in another post.  On this evening they had a "sib" night.  All of the jr and sr high siblings of a person with a disability were invited to a party at the beach.  The boys had an absolute blast.  They had a bonfire, ate s'mores, and had water balloon fights.  They were supposed to be finished at 10:15.  At 10:20 we got a text asking if they could stay longer because they were all having so much fun.  This was the beginning of a bond between these kids that would continue through the retreat.  I'll share more about that later.

I Run 4

I wanted to be sure to take a moment to tell you about this cool program.  The story goes that the man who started this was a runner.  On Facebook one day he posted that he runs because he can, and when he gets tired he thinks of those who can't run and runs harder for them.  That day a friend of his with Down Syndrome commented "You can run for me anytime!"

That sparked an idea to form a community of runners that would be matched with a "buddy" who has a disability of some sort and dedicate their workouts, miles, and races to them.  Some runners wear shirts that say I Run 4 with their buddy's name, some send their medals to their buddies, etc.  They are asked to make contact with their buddy a few times a week whether they work out or not.  The buddy's job is to encourage the runner and give them motivation to push themselves! 

I had heard about this program a few months ago and did not sign the girls up at the time.  Just recently I heard that they have an abundance of runners and are looking for buddies so I signed the girls up.  We were matched by the end of the day and our girls have two wonderful runners!

Oksana is matched with a woman from Minnesota who is about my age.  She has 3 children and is getting ready to do a triathlon in June.  Today she sent Oksana pictures of her bike ride in the rain and the beautiful rainbow she saw!  Oksana sent her a little video introducing herself and telling her that she hopes she wins her race.  She loved it!  In just a few days they have already communicated back and forth quite a few times.

Anya's runner is from Canada and she is 19 and so incredibly excited to have a buddy!  She just adores Anya.  I sent her a video of Anya saying "Hi" to her and blowing kisses.  The next day she ran 4 miles with her sister and sent Anya pictures of them on the trail and a picture of her running through the sprinkler afterwards to cool off.  She said that it was hard but she thought of her blowing kisses and it made her work harder ;).  She has already sent me a private message and asked for our address so that she can send Anya some medals from past races.

I have been so pleased with this program!  Anya really doesn't understand it but Oksana loves getting updates and notes from her runner!  Even if Anya doesn't understand it I am talking about her runner, sharing the pictures, and telling her what she is doing.  Someday she will get it!

I'll make a quick note here to say that I have heard just a few stories of duds...runners who never contact the buddy or do anything but those families were matched with new runners and have had great success.  I think those are the minority for sure.  Most everyone I know involved in the program has really enjoyed it.  

If you are interested in becoming a runner, or can sign up a buddy (all ages are welcome) go to http://www.whoirun4.com/ for more information.

Catching up

Our family is probably in the best place we've been in a year.  We are all working hard on healing from the emotional and physical strain that Oksana's illness put on us.  She is continuing to have a wonderful time of emotional stability.  She rarely has bad days any more, but does still have bad moments.  Summer is coming.  If I said I wasn't nervous I'd be lying, but we know so much more now than we did a year ago.  I've learned that education is key when it comes to mental illness.  The more you know the more equipped you are to respond and help in the best way possible. 

I don't think I have confirmed this yet on my blog.  It took me a long time and a lot of digging to really believe it myself.  Oksana is definitely experiencing auditory and visual hallucinations.  Her therapist is fantastic.  At this time her hallucinations are not violent, she is still present in our reality, and they aren't interfering with her life to the point that she can't do anything without them.  Our therapist and our psychiatrist are going to talk, but we are kind of feeling like because of  those things we do not want to add more medication.  We are hoping to take the approach of helping her to live with them.  If we can keep boundaries around them and she can ignore them when needed and still interact with them when it is appropriate then we would love to avoid another medication.  She is already on some heavy duty stuff to keep her mood stable.  She goes back to her psychiatrist on June 3 so I am anxious to see what she says and if she changes Oksana's diagnosis to schizoaffective disorder.  If you aren't familiar with that it is a blend of bipolar and schizophrenia.  I have no idea if her diagnosis will change now, but I suspect that someday it will.

We had IEP meetings for both girls and they were fantastic.  Both of them are really in their sweet spot at school.  They are growing and thriving so we aren't changing anything.  Of course some goals were adjusted to account for growth over the year, but overall we are all just loving where they are.  Such a change from just a few months ago when we were touring schools because we thought Oksana would not be able to stay in her school.  It felt very good walking out of those meetings with a great plan for next year.

The boys have finished their school year which marks the end of my 10th year of homeschooling.  The homeschool program my boys are in now has been an incredible asset to their education.  They have grown immensely this year and they have really enjoyed what this program has offered.  It looks like we will stay with it until they graduate.  Next year they will be in 10th and 7th grade.  Crazy!

Anya had her 7th birthday at the beginning of the month!  Since we had already had a party it was low key but fun.  She got her favorite dinner and favorite dessert.  She brought cupcakes to her class to celebrate and, since she really has no idea what a birthday is, we got her a shirt so she could announce it to everyone!

Finally, we are preparing for our trip to Joni and Friends family camp!!!  We are SOOOO excited!  We got a packet in the mail with more information.  Basically it seems that the day we arrive we will get settled in, have dinner, have an opening/welcome ceremony, and then have an ice cream social.  For the next three days we will have breakfast in the morning and then we break off.  The girls will go with their helpers for a morning of music, crafts, activities, etc.  The boys will go off for some teen/youth events.  Then Larry and I will go for adult events like worship and teaching, a time for moms to be pampered, a time for dads to have a bbq, etc.  We will come together again for lunch.  After lunch there will be events for families.  We can do whatever we want.  We can swim, go horseback riding, ride a zipline, play at the beach, etc.  Then we will eat dinner and the evenings are activities planned for the whole group.  Things like western night, crazy hair/hat night, a talent show, karaoke, etc.  One night is a date night for the parents.  They have all kinds of fun stuff planned for the kids and they feed us a nice dinner and give us a night to enjoy together.  How cool is that?!  Then on the last day we have breakfast, come together for a closing ceremony, and it is over at noon.  I'll be sure to share all about it!

I also want to tell you about I Run 4 but I'll do that in another post.  I'll leave you some random pictures.

Oksana with Anna and Elsa from Frozen at her cousin's birthday party.  It was a blast!

Evan is jumping 2 foot jumps now!

Ready to go....in her underwear and a jacket, Clayton's shoes, my purse, and my sunglasses :).

Oksana with the puppy being trained to be a therapy dog at her therapist's office.

NAMI

I can imagine that there might be some of you reading this who have children or a family member with mental illness.  I knew nothing about mental illness before all of this.  Quite frankly it scared me.  The one experience I had was a family friend whose brother with schizophrenia killed his parents.  I'm going to be honest with you.  I grieved this diagnosis and I grieved it hard.  I was mentally and physically beaten and battered down after the events of last summer so I was already in a state of crisis and distress.  Still, I told myself that we would get this fixed, it was OK, it was temporary, etc.  It was then that we got the bipolar diagnosis.  Suddenly it wasn't OK and it sure wasn't temporary.  I was angry and I was scared.  The words "I didn't ask for this" came out of my mouth a lot....a whole lot. 

Now back up a bit.  When all of this first started to escalate Larry and I were taking classes to become adoptive parents through the state.  One of the trainers had a daughter with mental illness.  We talked to her about Oksana and she suggested looking into NAMI.  I find it interesting that through this whole journey she is the only one who ever said anything to us about NAMI.  I called someone from our local NAMI chapter and she said that NAMI Basics is a 6 week class designed for parents of children with mental illness and would be perfect for us.  I registered for that class twice and both times it was cancelled due to low enrollment.  Finally, they offered it again and had enough people to move forward. 

I've been in this class for 3 weeks now and I don't want it to ever end.  I look so forward to every single Thursday evening.  I don't know what I like more.....the incredible information that I get each week, or being in a room with people who "get it".  I walked out of the first class feeling like everything I had experienced and felt in the last 9 months had been normalized.  That was an incredible feeling.  Through the 6 weeks they will talk about the biology of mental illness, medications, doctors, schools, and more.  After all of the books I've read and experiences I've had I though this might be old news.  It's not.  Some of the information they are giving are things I've never heard anywhere else.

They have other classes and support groups offered so please look for your local NAMI chapter if you are affected in any way by mental illness.  It is now my mission to make sure that doctors know about this and tell their patients.  I already told my primary care physician and she had no idea.  How many people do you think she comes in contact with that could benefit from what NAMI has to offer? 

I had done a lot of healing recently, but this class has helped me understand and feel better equipped to parent a child with mental illness than anything before it.  Mental illness doesn't scare me anymore.  That doesn't mean I won't still have times of crisis and grief as we walk this road, and it doesn't mean I won't sometimes be scared of the future or of making hard decisions.....but I'm not scared of mental illness.  I didn't ask for this but I have it.  It's time to accept it for what it is and move forward for Oksana and for the rest of our family.

Easter

I know I'm posting this and it's technically not even Easter yet but it was for us!  This is a busy season for Larry so he has been working a ton.  It just worked out better to celebrate today.  Tomorrow we will hang out at home, have fun as a family, and eat candy all day :).  Maybe we will watch the Jesus Film for kids.  I have to decide if Oksana can handle that or not.  Sadly we won't be attending any services because I have 2 sick and snotty kids on my hand.  Just colds, but I wouldn't want them around other kids.  They were able to have fun today though and for once I actually got a lot of pictures so this is your warning that this is a picture heavy post!

Before I jump into today I'll share some egg coloring pictures from last night.

I'm not sure Evan is capable of taking a picture that isn't silly!

 

We started our morning finding baskets.  My mother in law does so much candy that it will last us until next Easter so I only do a little bit of candy.  I mostly do little gifts.  The boys got a book about Doctor Who and chocolate Daleks and TARDISes.  If you aren't a Doctor Who fan you will have no idea what that means.  My boys just discovered it a few months ago and they LOVE it.  The girls got punch balloons and little fuzzy ball things (I have no idea what they are called).  Anya got an Elmo guitar and Oksana got the new Tinkerbell movie.  All of the kids got silly string :).

This is what happens every time I try to get a picture of him!

Naked as usual.  She never wears clothes in the house.

Then we got everyone dressed and took a few pictures....of the girls.  I think the boys' heads were in Doctor Who books.

 

I love this picture of Larry practicing for Easter services while Anya watches intently!

After that we headed over to my in law's house to celebrate.  We had an Easter egg hunt (that Anya was NOT impressed with), played outside, ate, and had tons of fun.

The one egg she actually got before she decided this was all a bunch of bologna and started with a major attitude!

 

 Anya in time out for being rude!

Last but not least, we went home so Larry could head to work for Saturday night service and I took the kids outside for a silly string fight. :)

Yes, that is ME they are shooting and silly string on my camera!

Clayton coming out double fisted.

Clayton claiming victory :)!

Not a fan of silly string at all.  Honestly, she does know how to have fun as long as it doesn't involve egg hunts or silly string!

 

My back porch after it was over.  At least it was pretty!

All in all a very fun day.  I think I took more pictures today than I have in the last 6 months!  I am looking forward to a relaxing day tomorrow celebrating the resurrection!  Happy Easter!