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?
Saturday, June 21, 2014
Monday, June 16, 2014
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.
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.
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 :).
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. |
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 :).
Sunday, June 15, 2014
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.
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.
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. |
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.
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