If you are bored and have 20ish minutes to kill here is a video of the talk I did for our women's Christmas event at church. It shares a bit of what we have been through and how it is changing me:
https://vimeo.com/148680406
Monday, December 28, 2015
Wednesday, December 23, 2015
Hello from the hospital
Well, we went to see Oksana's GI Doctor this morning and she said we were going to have to hospitalize her to have her disimpacted. Ugh. I could have waited but with 2 days to Christmas I decided to just get it over with. Now she will be comfortable on Christmas. We are sitting here watching movies and listening to the little machine pump the stuff in her NG tube that will clean her out. It's going to be a fun night. :/
Thursday, December 17, 2015
Another diagnosis?
Yesterday I took Oksana to the genetics clinic at our local Children's Hospital. They are doing whole exome sequencing. If you don't know much about that....well neither do I! Basically it is a really, really detailed form of genetic testing. In fact, the test is going to take about 6 months to complete. We gave a detailed history of Oksana and the things we have seen in the last few years. After examining her the geneticist turned to me and said "I feel confident we are going to find something." I thought that was a bit unusual since they had just given me a big talk about how there was a possibility they wouldn't find anything or that they would find something but have no idea what it is. I told her she seemed pretty confident so I asked what she is thinking. She said she believes that Oksana has a neurodegenerative disease. I asked her if she was thinking of any specific disease. She told me that there are MANY of them and that they often present with psychiatric issues. The loss of some skills is what is concerning her. Oksana can barely sit up, barely walk, and barely feed herself. We thought this was all behavioral but I couldn't figure out why nothing we did made any improvement. She believes Oksana could have something like Nieman-pick type c or Tay Sachs late onset type.
I have done a whole lot of two things since she told me that:
1) Cry
2) Research
Honestly, I completely see why she thinks this. If this is true it explains so many things. It all makes sense and I hate that it makes sense. If this is true, the skills she has lost will never be regained, she will continue to lose skills, and depending on the disease it is fatal.
So we are in this weird place where we have 6 months to wait for an answer, yet we need to make decisions in those 6 months that keep in mind that this is a very real possibility, while at the same time realizing it could be nothing. Want to know what my gut says? My gut says it isn't nothing. My gut says even if it isn't a neurodegenerative disease she is on the right track. My gut says Oksana is not going to get those skills back. So now as we prepare for her to come home we really need to take this into consideration. A personal care assistant will now help us not only behaviorally but medically. Quite frankly, I feel fairly confident that if we treat Oksana as someone who has lost skills and not as someone who is trying to get out of doing something it will reduce her behaviors quite a bit.
I also contacted her physical therapist. She hasn't seen Oksana for about 4 months now. I told her about this and she wants to have a big meeting in the new year and discuss what we will need to bring her home. We have to consider seating, feeding, etc. If she isn't going to regain these skills we need some serious adaptive equipment. If she does regain them...fantastic! We are preparing for the worst and hoping for the best.
Tomorrow we have a big meeting with her team at residential and this will obviously be a topic of conversation. I also think at this point Oksana needs to come home in February. If this really is a genetic condition there is nothing more that residential can do for her. February will give us the time we need to get things in place in our house to care for her.
I have done a whole lot of two things since she told me that:
1) Cry
2) Research
Honestly, I completely see why she thinks this. If this is true it explains so many things. It all makes sense and I hate that it makes sense. If this is true, the skills she has lost will never be regained, she will continue to lose skills, and depending on the disease it is fatal.
So we are in this weird place where we have 6 months to wait for an answer, yet we need to make decisions in those 6 months that keep in mind that this is a very real possibility, while at the same time realizing it could be nothing. Want to know what my gut says? My gut says it isn't nothing. My gut says even if it isn't a neurodegenerative disease she is on the right track. My gut says Oksana is not going to get those skills back. So now as we prepare for her to come home we really need to take this into consideration. A personal care assistant will now help us not only behaviorally but medically. Quite frankly, I feel fairly confident that if we treat Oksana as someone who has lost skills and not as someone who is trying to get out of doing something it will reduce her behaviors quite a bit.
I also contacted her physical therapist. She hasn't seen Oksana for about 4 months now. I told her about this and she wants to have a big meeting in the new year and discuss what we will need to bring her home. We have to consider seating, feeding, etc. If she isn't going to regain these skills we need some serious adaptive equipment. If she does regain them...fantastic! We are preparing for the worst and hoping for the best.
Tomorrow we have a big meeting with her team at residential and this will obviously be a topic of conversation. I also think at this point Oksana needs to come home in February. If this really is a genetic condition there is nothing more that residential can do for her. February will give us the time we need to get things in place in our house to care for her.
Tuesday, December 1, 2015
Triggered
So much to share and I just don't have the time to do it. I have to say that I love my job, but the front desk work combined with the teaching has been hard on me. My class is only one semester and it will be over January 22. After that I don't think I will teach my own class again. I'll stay at the front desk and happily sub so I can say no when I need to. I adore these kids more than I ever thought I would so subbing will be a great chance for me to stay connected with them in the classroom. Just too much going on in my family and my head for all of it.
Oksana's first 90 days in residential is over and we are starting the second 90 days. Next Thursday we are having a meeting with Crider and Regional. This will be the first of many to come to discuss what we need in our home when she comes back. This has me triggered big time. I'm feeling very anxious and scared a lot. I'm constantly thinking about it and worrying. I know I need to stop, but with the meetings happening regularly I think it is going to be very hard for me to get past this.
They are talking very seriously about putting a PCA in our house. She would do all of Oksana's care. We would not have to bathe, dress, or anything that is an area that usually causes her to scream at us and harm us or herself. Thankfully our team understands the trauma we have been through and they absolutely do not want things going back the way they were. I'm thankful for that, but I don't think they realize how hard it will be to not only be living with a stranger in our house, but also listening to Oksana scream.
I'll have more info after the meeting.
In the meantime we did go on vacation with the 3 kids and had a blast. I will post about that in a separate post soon.
Oksana's first 90 days in residential is over and we are starting the second 90 days. Next Thursday we are having a meeting with Crider and Regional. This will be the first of many to come to discuss what we need in our home when she comes back. This has me triggered big time. I'm feeling very anxious and scared a lot. I'm constantly thinking about it and worrying. I know I need to stop, but with the meetings happening regularly I think it is going to be very hard for me to get past this.
They are talking very seriously about putting a PCA in our house. She would do all of Oksana's care. We would not have to bathe, dress, or anything that is an area that usually causes her to scream at us and harm us or herself. Thankfully our team understands the trauma we have been through and they absolutely do not want things going back the way they were. I'm thankful for that, but I don't think they realize how hard it will be to not only be living with a stranger in our house, but also listening to Oksana scream.
I'll have more info after the meeting.
In the meantime we did go on vacation with the 3 kids and had a blast. I will post about that in a separate post soon.
Sunday, November 15, 2015
Oksana
So much has happened that I really don't even know where to start. I'm learning that advocacy is a full time job. I'm constantly fielding emails and phone calls, questioning policies, asking questions, and making visits. Sometimes I am handling big issues and sometimes I am handling little ones. Let me tell you....the little ones can be just as annoying as the big. Sometimes I just shake my head. Here are a few of the things we have dealt with in the last couple of weeks:
- Oksana has been moved to a new teacher and we really like her. She enjoys going to school again and is toileting more consistently during school. I'll share more about why we made that change another time. It wasn't pretty.
- I learned that they were having men bathe Oksana. After questioning that policy it has been changed.
- Oksana went so far downhill that I called the psychiatrist convinced that she was catatonic. She basically got to the point that she would lay on the floor and not move for a very long time. She wasn't speaking, wasn't eating, was constantly slumped over, etc. It was bad. After some bloodwork we learned that her depakote levels are high and she shows sign of a chronic infection. They suspect she may have had mono which would explain things. They tested her for it and we will have results next week.
- While we were concerned about catatonia we also made the decision to do some extensive genetic testing. She will go to the genetics clinic at children's hospital in December. Every one is convinced that with her level of complexity there has to be more going on than we can see. We also discussed possible further neruological testing.
- A few weeks before Halloween we went out and got Oksana a costume. It was an angel costume. We went to see her last week and I was so excited to hear about Halloween. I found out that they lost the dress and made her a pirate. It's not a huge deal but I paid money for that, I picked it out because I thought it would make her feel special, and how on earth do you lose a big gold glittery dress?!
-We had another big meeting about Oksana with the team who has been helping us since this summer. We talked about all of the pros and cons of where we are right now. It was decided that they will extend Oksana's stay another 3 months. After that I have no idea what will happen.
- We are planning another meeting next week with the residential center and the school to address some concerns (like the fact that we suspect they are feeding her) and make sure we are all on the same page again.
And that's really just the tip of the iceberg. The good news is that physically she is doing better. They suspect that if it was mono that she had, she is getting over it because she is perking up again. We do have a good team of people willing to help us so that is the first step. Unfortunately communication stinks there but I hope that we can work through that. I'll try to get some pictures when we see her on Friday.
- Oksana has been moved to a new teacher and we really like her. She enjoys going to school again and is toileting more consistently during school. I'll share more about why we made that change another time. It wasn't pretty.
- I learned that they were having men bathe Oksana. After questioning that policy it has been changed.
- Oksana went so far downhill that I called the psychiatrist convinced that she was catatonic. She basically got to the point that she would lay on the floor and not move for a very long time. She wasn't speaking, wasn't eating, was constantly slumped over, etc. It was bad. After some bloodwork we learned that her depakote levels are high and she shows sign of a chronic infection. They suspect she may have had mono which would explain things. They tested her for it and we will have results next week.
- While we were concerned about catatonia we also made the decision to do some extensive genetic testing. She will go to the genetics clinic at children's hospital in December. Every one is convinced that with her level of complexity there has to be more going on than we can see. We also discussed possible further neruological testing.
- A few weeks before Halloween we went out and got Oksana a costume. It was an angel costume. We went to see her last week and I was so excited to hear about Halloween. I found out that they lost the dress and made her a pirate. It's not a huge deal but I paid money for that, I picked it out because I thought it would make her feel special, and how on earth do you lose a big gold glittery dress?!
-We had another big meeting about Oksana with the team who has been helping us since this summer. We talked about all of the pros and cons of where we are right now. It was decided that they will extend Oksana's stay another 3 months. After that I have no idea what will happen.
- We are planning another meeting next week with the residential center and the school to address some concerns (like the fact that we suspect they are feeding her) and make sure we are all on the same page again.
And that's really just the tip of the iceberg. The good news is that physically she is doing better. They suspect that if it was mono that she had, she is getting over it because she is perking up again. We do have a good team of people willing to help us so that is the first step. Unfortunately communication stinks there but I hope that we can work through that. I'll try to get some pictures when we see her on Friday.
Friday, November 13, 2015
God is funny like that
Earlier this year I told someone in our women's ministry that I would be willing to share some of our story during a bible study. God used that in a big way and it was a huge blessing. It was very healing for me. When I get to share my story it gives purpose to my suffering. Some relate even if they aren't living the exact same situation and they see that someone understands. Some can't relate but maybe they better understand the suffering of someone else in their life.
After that was over we went through some very hard times with Oksana and so there was no time to focus on anything but surviving. Now that she has been out of our home for a couple of months and we have had time to regroup, God has decided it's time for me to get working again.
A month or so ago I was given the opportunity to give some input into a written piece about parenting children with mental illness. http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/
From that I was asked to write a piece on my own and I recently wrote this: http://themighty.com/2015/11/5-ways-having-a-child-with-mental-illness-has-changed-me-for-the-better/
I was also asked to write something for Lutheran Children and Family Services and NAMI but I haven't done that yet.
Then came the speaking.
First NAMI called and asked if we would come speak to a politician that they were meeting with and share our story.
Next, I was approached about being the speaker at the Christmas Gala event that the women's ministry of our church has every year. I agreed to it but I still have no idea why they chose me. Apparently God has something for me to say so I've been writing and asking Him to make it clear to me.
Then the Department of Mental Health approached me and asked if Larry and I would come speak at their big regional staff meeting about a parent's perspective on mental illness and our struggles in the system. Ummmm.....yes.
Finally, Lutheran Children and Family Services contacted me and asked me to come to their staff meeting to talk to them about our story and then do a Q&A with their staff.
On the more relaxed and fun side of it all I got to do a presentation on Down Syndrome to Anya's class and was asked to come next week and do the same thing in another class that has a boy with Down Syndrome.
I have no idea what God is up to but he gave me this for a reason so I'm just going to follow along and see what happens.
I promise I will do an Oksana update soon.
After that was over we went through some very hard times with Oksana and so there was no time to focus on anything but surviving. Now that she has been out of our home for a couple of months and we have had time to regroup, God has decided it's time for me to get working again.
A month or so ago I was given the opportunity to give some input into a written piece about parenting children with mental illness. http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/http://themighty.com/2015/10/a-parents-guide-to-mental-illness-in-the-family/
From that I was asked to write a piece on my own and I recently wrote this: http://themighty.com/2015/11/5-ways-having-a-child-with-mental-illness-has-changed-me-for-the-better/
I was also asked to write something for Lutheran Children and Family Services and NAMI but I haven't done that yet.
Then came the speaking.
First NAMI called and asked if we would come speak to a politician that they were meeting with and share our story.
Next, I was approached about being the speaker at the Christmas Gala event that the women's ministry of our church has every year. I agreed to it but I still have no idea why they chose me. Apparently God has something for me to say so I've been writing and asking Him to make it clear to me.
Then the Department of Mental Health approached me and asked if Larry and I would come speak at their big regional staff meeting about a parent's perspective on mental illness and our struggles in the system. Ummmm.....yes.
Finally, Lutheran Children and Family Services contacted me and asked me to come to their staff meeting to talk to them about our story and then do a Q&A with their staff.
On the more relaxed and fun side of it all I got to do a presentation on Down Syndrome to Anya's class and was asked to come next week and do the same thing in another class that has a boy with Down Syndrome.
I have no idea what God is up to but he gave me this for a reason so I'm just going to follow along and see what happens.
I promise I will do an Oksana update soon.
Wednesday, November 11, 2015
Cheerleader
This post is mostly for Sharon! Sharon met Anya in Bulgaria when she was visiting her daughter so she likes it when I keep her updated on Anya's insanity ;).
This time last year we singed Anya up for cheerleading. It only lasted a few months and was just something for fun. It ended back in March and she has talked about it pretty much weekly ever since! I was just getting ready to sign her up again when I learned about a special needs cheer squad. They run year round and cheer at competitions all over the city. It was a pretty penny, but I thought we would at least give it a try. Oh my.....she absolutely loves it! This is definitely her "thing"! Her coach is a former Mizzou cheerleader and is now and OT. It's an awesome team! Here are some pictures:
This time last year we singed Anya up for cheerleading. It only lasted a few months and was just something for fun. It ended back in March and she has talked about it pretty much weekly ever since! I was just getting ready to sign her up again when I learned about a special needs cheer squad. They run year round and cheer at competitions all over the city. It was a pretty penny, but I thought we would at least give it a try. Oh my.....she absolutely loves it! This is definitely her "thing"! Her coach is a former Mizzou cheerleader and is now and OT. It's an awesome team! Here are some pictures:
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| She was terrified of stunts when she started, but now she loves it! She still doesn't want to stay up there long though! |
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| I adore this picture. |
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| The jacket and the bow the size of her head! |
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| Stunts! |
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| The team and their buddies! |
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| Her first competition. The special needs teams don't get judged, but at this one she got a participation medal! |
Thursday, October 22, 2015
Very quick update and I will explain more later
I'm going to share a few basic things we are dealing with right now more as a reminder to myself so that I can come back later and expand on them.
I mentioned in my last blog that the woman who was our main contact at the residential center was suddenly no longer working there. We were just getting to know the woman who took her place and I just found out today that she quit. UGH!
On Wednesday our Crider and Regional center caseworkers had a meeting with the supervisors at the residential center to get some things clarified and express concern about the lack of communication and lack of consistency in care. The supervisors were awesome. They stepped right up and created a fantastic action plan. If they really follow through I think we are on a good track to be making progress.
In that meeting we learned that someone (I don't feel comfortable saying who yet because this is public but I will as soon as it is resolved) who is involved in Oksana's care did some things that could be considered abuse. I will explain more about what she did as well later. After discussing it with Crider and Regional it was decided that we would contact her supervisor and give her a chance to deal appropriately with it or we would hotline her. I talked to the supervisor tonight and she was extremely concerned and is already moving up the chain of command to deal with this. This person will not be part of Oksana's team anymore soon and if I get my way she will be fired because I don't believe she should be doing this job.
This is my reminder to myself to tell you more about Anya's behaviors and what we are learning. She is doing awesome but we have learned some triggers that haven't been a problem in the past. I'm sure they are appearing now because of all of the stress with Oksana and then her sudden disappearance. It's nothing we can't deal with, just a bummer that we even have to.
Evan got braces today! He's feeling the pain but overall said that they whole experience hasn't been as bad as he thought it would be. Today Evan was also diagnosed with anxiety. I will share more about that soon too.
Clayton has been a part of the technical theater team, building sets, etc and this weekend is the big show. I can't wait to see it. It is the ballet Giselle. He recently expressed interest in getting involved in musical theater. I'm shocked. Absolutely shocked. I'm also thrilled that he is stepping out of his box and whether he enjoys it or not I think it will be an awesome experience.
Sorry for all of the vague descriptions but it is late and I have to get up early! I'll be back soon!
I mentioned in my last blog that the woman who was our main contact at the residential center was suddenly no longer working there. We were just getting to know the woman who took her place and I just found out today that she quit. UGH!
On Wednesday our Crider and Regional center caseworkers had a meeting with the supervisors at the residential center to get some things clarified and express concern about the lack of communication and lack of consistency in care. The supervisors were awesome. They stepped right up and created a fantastic action plan. If they really follow through I think we are on a good track to be making progress.
In that meeting we learned that someone (I don't feel comfortable saying who yet because this is public but I will as soon as it is resolved) who is involved in Oksana's care did some things that could be considered abuse. I will explain more about what she did as well later. After discussing it with Crider and Regional it was decided that we would contact her supervisor and give her a chance to deal appropriately with it or we would hotline her. I talked to the supervisor tonight and she was extremely concerned and is already moving up the chain of command to deal with this. This person will not be part of Oksana's team anymore soon and if I get my way she will be fired because I don't believe she should be doing this job.
This is my reminder to myself to tell you more about Anya's behaviors and what we are learning. She is doing awesome but we have learned some triggers that haven't been a problem in the past. I'm sure they are appearing now because of all of the stress with Oksana and then her sudden disappearance. It's nothing we can't deal with, just a bummer that we even have to.
Evan got braces today! He's feeling the pain but overall said that they whole experience hasn't been as bad as he thought it would be. Today Evan was also diagnosed with anxiety. I will share more about that soon too.
Clayton has been a part of the technical theater team, building sets, etc and this weekend is the big show. I can't wait to see it. It is the ballet Giselle. He recently expressed interest in getting involved in musical theater. I'm shocked. Absolutely shocked. I'm also thrilled that he is stepping out of his box and whether he enjoys it or not I think it will be an awesome experience.
Sorry for all of the vague descriptions but it is late and I have to get up early! I'll be back soon!
Monday, October 12, 2015
So this is what "normal" feels a bit like
I have to say....I can't remember the last time I felt so relaxed and really got to focus on my kids, myself, and my husband. Let me tell you a bit of what has been going on here.
Shortly after Oksana left and I started to turn my focus back to my other kids I noticed a couple of things about Evan. First is that the more independent he gets the more we are seeing that all of the things about Evan that we thought were "carelessness", "rushing", "ditzy", "forgetful", are actually far more than that. The older and more independent he gets the more we see some things about Evan impacting his life. We recently went to a psychologist and it is looking likely that Evan will be diagnosed with ADD (which is now called the inattentive type of ADHD). The other thing I focused on was finally getting him to an orthodontist. His teeth aren't bad overall but he has one tooth that can not come down into place because it is hitting the tooth next to it. Guess who is getting braces in about 10 days? In other news he is very active at the barn. They have started an equestrian team for jr high and high school and he will have an opportunity to letter in the sport! He is going to be competing twice this month and has been volunteering his time working at the barn on Saturdays to learn more and earn free riding time. I spend a lot of time back and forth between home and the barn!
Clayton has been taking a technical theater class and right now they are working hard on an amazing set for Giselle, a ballet the school is doing in 2 weeks. I'm not a big ballet person but since Clayton is part of the crew and 3 of the kids that are in his high school class are in it I am going to go. I'm actually pretty excited about it if for no other reason than to see these kids do what they love! I'll post pictures of the set as soon as I can. He has also been working 2 days a week as a janitor at our church. He seems to like it overall, and it is teaching him a lot of great skills. Now if only I could get him to drive. He has his license, has no desire to drive, and acts tortured when I make him.
Anya, Anya, Anya....always an adventure with this kid. She is continuing to make great progress with her behavior therapist. I am thrilled. She went to orientation for the pageant last week and made quite an impression on everyone! At one point she was trying to steal the microphone from the lady presenting so she could sing. I don't think we will have a problem getting her on stage. We might, however, have a problem getting her off! Last week she joined a special needs cheer squad. Let me tell you....this girl is in heaven! She absolutely loves cheering! For once I get to just be the mom. She has an awesome one on one helping her! This squad goes year round and does local competitions. Wait until you see the uniform. Oh my, she is going to look precious! Yesterday they started working on stunts. At first she wanted absolutely nothing to do with it but little by little she got higher and higher. Now she calls it flying and wants to be up all the time!
Friday was supposed to be our first family therapy session with Oksana. Her main therapist is Jennifer and she was our contact person for everything, and the main contact for Crider and Regional Center. She was also our main contact when Oksana was there earlier in the year. She knows our family well so when we found out that Crider required family therapy she immediately said she wanted to be our therapist. We set up a time that we could be sure she would be there. On Monday she sent me a text and verified the time for Friday. On Friday I sent her a text asking where she wanted us to meet her and got no response. So I called and got no answer. We went ahead to the main desk and told them we were there for family therapy with Jennifer. They told us to have a seat and we waited, and waited, and waited. Finally someone came in and asked us to join them in a meeting room. When we all got in there she said "There is no good way to tell you this. Jennifer is no longer with us." I was SHOCKED....like jaw on the floor shocked. I still don't know what happened. Long story short we met the woman replacing her, ended up just having a visit with Oksana, and rescheduled family therapy for the next week.
We had a rather good visit with Oksana. We laughed and talked had a nice time. If you aren't my facebook friend, you have to hear this story. She was telling me that Betch, one of her hallucinations, talks about one of the girls that is in residential with her. I asked what Betch says. She told me that Betch doesn't understand why she calls the staff "Betches" and "Holes". Now Oksana does not understand cuss words so this is what she thinks the girl is calling the staff but you can put two and two together and figure out what she is really calling them! So I tried to play it off as no big deal and told her that was pretty silly to which she replied "The staff sure doesn't think so!!" I died laughing! These are some of the benefits of that intellectual disability!
Larry and I are getting ready for a weekend away together in a couple of weeks! I.CAN'T.WAIT! We are going to go to a Weekend to Remember marriage conference. These are the conferences that FamilyLife does and that is the ministry we worked for in Little Rock. We are so excited to get to see some old friends from the ministry and spend a weekend focusing on each other. It will be awesome :).
In other news we have a new family member! Our nephew, Zaine, was born earlier this week. He is so cute! I love having another boy in the family. My in laws have 7 grandchildren now and our 2 boys were the only boys for a long time. Here are some pictures from the first time we met him.
I think that updates you for now. I'll be back soon to share more!
Shortly after Oksana left and I started to turn my focus back to my other kids I noticed a couple of things about Evan. First is that the more independent he gets the more we are seeing that all of the things about Evan that we thought were "carelessness", "rushing", "ditzy", "forgetful", are actually far more than that. The older and more independent he gets the more we see some things about Evan impacting his life. We recently went to a psychologist and it is looking likely that Evan will be diagnosed with ADD (which is now called the inattentive type of ADHD). The other thing I focused on was finally getting him to an orthodontist. His teeth aren't bad overall but he has one tooth that can not come down into place because it is hitting the tooth next to it. Guess who is getting braces in about 10 days? In other news he is very active at the barn. They have started an equestrian team for jr high and high school and he will have an opportunity to letter in the sport! He is going to be competing twice this month and has been volunteering his time working at the barn on Saturdays to learn more and earn free riding time. I spend a lot of time back and forth between home and the barn!
Clayton has been taking a technical theater class and right now they are working hard on an amazing set for Giselle, a ballet the school is doing in 2 weeks. I'm not a big ballet person but since Clayton is part of the crew and 3 of the kids that are in his high school class are in it I am going to go. I'm actually pretty excited about it if for no other reason than to see these kids do what they love! I'll post pictures of the set as soon as I can. He has also been working 2 days a week as a janitor at our church. He seems to like it overall, and it is teaching him a lot of great skills. Now if only I could get him to drive. He has his license, has no desire to drive, and acts tortured when I make him.
Anya, Anya, Anya....always an adventure with this kid. She is continuing to make great progress with her behavior therapist. I am thrilled. She went to orientation for the pageant last week and made quite an impression on everyone! At one point she was trying to steal the microphone from the lady presenting so she could sing. I don't think we will have a problem getting her on stage. We might, however, have a problem getting her off! Last week she joined a special needs cheer squad. Let me tell you....this girl is in heaven! She absolutely loves cheering! For once I get to just be the mom. She has an awesome one on one helping her! This squad goes year round and does local competitions. Wait until you see the uniform. Oh my, she is going to look precious! Yesterday they started working on stunts. At first she wanted absolutely nothing to do with it but little by little she got higher and higher. Now she calls it flying and wants to be up all the time!
Friday was supposed to be our first family therapy session with Oksana. Her main therapist is Jennifer and she was our contact person for everything, and the main contact for Crider and Regional Center. She was also our main contact when Oksana was there earlier in the year. She knows our family well so when we found out that Crider required family therapy she immediately said she wanted to be our therapist. We set up a time that we could be sure she would be there. On Monday she sent me a text and verified the time for Friday. On Friday I sent her a text asking where she wanted us to meet her and got no response. So I called and got no answer. We went ahead to the main desk and told them we were there for family therapy with Jennifer. They told us to have a seat and we waited, and waited, and waited. Finally someone came in and asked us to join them in a meeting room. When we all got in there she said "There is no good way to tell you this. Jennifer is no longer with us." I was SHOCKED....like jaw on the floor shocked. I still don't know what happened. Long story short we met the woman replacing her, ended up just having a visit with Oksana, and rescheduled family therapy for the next week.
We had a rather good visit with Oksana. We laughed and talked had a nice time. If you aren't my facebook friend, you have to hear this story. She was telling me that Betch, one of her hallucinations, talks about one of the girls that is in residential with her. I asked what Betch says. She told me that Betch doesn't understand why she calls the staff "Betches" and "Holes". Now Oksana does not understand cuss words so this is what she thinks the girl is calling the staff but you can put two and two together and figure out what she is really calling them! So I tried to play it off as no big deal and told her that was pretty silly to which she replied "The staff sure doesn't think so!!" I died laughing! These are some of the benefits of that intellectual disability!
Larry and I are getting ready for a weekend away together in a couple of weeks! I.CAN'T.WAIT! We are going to go to a Weekend to Remember marriage conference. These are the conferences that FamilyLife does and that is the ministry we worked for in Little Rock. We are so excited to get to see some old friends from the ministry and spend a weekend focusing on each other. It will be awesome :).
In other news we have a new family member! Our nephew, Zaine, was born earlier this week. He is so cute! I love having another boy in the family. My in laws have 7 grandchildren now and our 2 boys were the only boys for a long time. Here are some pictures from the first time we met him.
I think that updates you for now. I'll be back soon to share more!
Thursday, October 1, 2015
Head Shots
I just registered Anya for the pageant. I'm still laughing about the whole thing! Here are the head shots my friend took! I chose the one at the bottom. Even though the other 2 are amazing the one at the bottom is best for the purposes. She is so cute!
Monday, September 28, 2015
How It's Going
Thank you Samara J for lighting a fire under my behind to update this blog! I really should update more often because there is plenty to share. Since I'm behind I'll have to give an overview.
Oksana is not doing well. She has decided to completely refuse to walk. She whines and cries constantly to try to get them to do things for her and then when they do she laughs at them and says things like "got you". Oh boy she is having a good old time. She is driving the staff insane. We had a meeting about her last week with her teacher, residential staff, Crider, and regional center (department of mental health). It was a really good meeting. We came up with some ideas to attempt to get her walking again. They told us how she is exhausting the staff. I have to admit that I felt validated. Larry and I have been doing this for so long alone. We have been exhausted beyond belief. It was good to know that someone else understands what we feel. Her aggression has not increased greatly which is good. She is choosing different behaviors this time. She has figured out they are more effective at getting her what she wants. That is not to say that she isn't aggressive but it isn't any more than the usual. After our meeting her Crider worker went to do a visit with her. They walked out to see her and she was flat on the ground refusing to walk to the cafeteria to eat. It was good for her to see first hand what Oksana is doing. She mentioned to me that just the 20 minutes she spent with her was exhausting. She is really pulling out all the stops.
We have only seen her a couple of times. We took her to the doctor and that went well. She really wanted to go to lunch so she did a very good job of holding herself together. She started to fall apart after lunch was over (no more incentive to behave) but we got her in the car quickly and got her back to residential. The next time we went to visit her our visit went well but by the end she decided to completely refuse to walk and we had to call the staff to come get her. The third time we went to visit her they were on a field trip and no one told us. I always give them advanced notice of our visits for just this reason. I was so annoyed. That was just this past weekend and I don't know if we will have a chance to see her again before Saturday.
In other news I am really enjoying my job. It has taken me quite awhile to get back int he groove of teaching. I primarily have taught preschool to lower elementary and now I am teaching high school. It is quite a change and I am writing the curriculum so it is has been challenging. I love my students and I'm having a lot of fun with them. I also love working front desk at the school. I have gotten to know the kids and parents so much better than when I just dropped the boys off and picked them up. It has been a real blessing.
We are working with Anya's behavior therapist and she is doing great. We still have a long way to go but we have already SIGNIFICANTLY reduced one of her most annoying behaviors. Her therapist warned us that it would get worse before it got better. Boy did it! I was physically shaking one day because her behaviors were CONSTANT. After that day it started dropping off pretty fast. Like I said, we still have a long way to go but it has been great to have the time and energy to focus on her now!
We are also having Evan evaluated for ADHD. Again, now that our attention isn't 110% on Oksana we are seeing things and working on things that we haven't had a chance to address because she demanded so much of us. Evan is such a great kid. Unfortunately he is showing a number of signs of the inattentive type of ADHD in his school work. I think it hid itself for a long time because he was homeschooled and I served as his external organizer. Now that he is becoming more and more independent it is affecting him in many areas. We have seen it in school, horseback riding, and we also learned that there is a link between ADD and Social Anxiety Disorder which is a huge issue for him. He will be evaluated in early October.
Amazing what we can do when we can focus on everyone in our family and not just one person....
One more random little update. Because it will be absolutely hilarious, I have decided to put Anya in a beauty pageant for people with special needs :). Her respite provider is going to help her on stage (this pageant has a helper for all of the contestants). I think she will need a talent. She will probably kick someone and stick her tongue out at them! She's pretty talented when it comes to misbehavior! I have to send in a head shot of her. My friend who does our family pictures really wants to do a head shot of her so I will post it on Thursday when we meet up with her. If nothing else this should give us something fun to focus on for awhile :).
Oksana is not doing well. She has decided to completely refuse to walk. She whines and cries constantly to try to get them to do things for her and then when they do she laughs at them and says things like "got you". Oh boy she is having a good old time. She is driving the staff insane. We had a meeting about her last week with her teacher, residential staff, Crider, and regional center (department of mental health). It was a really good meeting. We came up with some ideas to attempt to get her walking again. They told us how she is exhausting the staff. I have to admit that I felt validated. Larry and I have been doing this for so long alone. We have been exhausted beyond belief. It was good to know that someone else understands what we feel. Her aggression has not increased greatly which is good. She is choosing different behaviors this time. She has figured out they are more effective at getting her what she wants. That is not to say that she isn't aggressive but it isn't any more than the usual. After our meeting her Crider worker went to do a visit with her. They walked out to see her and she was flat on the ground refusing to walk to the cafeteria to eat. It was good for her to see first hand what Oksana is doing. She mentioned to me that just the 20 minutes she spent with her was exhausting. She is really pulling out all the stops.
We have only seen her a couple of times. We took her to the doctor and that went well. She really wanted to go to lunch so she did a very good job of holding herself together. She started to fall apart after lunch was over (no more incentive to behave) but we got her in the car quickly and got her back to residential. The next time we went to visit her our visit went well but by the end she decided to completely refuse to walk and we had to call the staff to come get her. The third time we went to visit her they were on a field trip and no one told us. I always give them advanced notice of our visits for just this reason. I was so annoyed. That was just this past weekend and I don't know if we will have a chance to see her again before Saturday.
In other news I am really enjoying my job. It has taken me quite awhile to get back int he groove of teaching. I primarily have taught preschool to lower elementary and now I am teaching high school. It is quite a change and I am writing the curriculum so it is has been challenging. I love my students and I'm having a lot of fun with them. I also love working front desk at the school. I have gotten to know the kids and parents so much better than when I just dropped the boys off and picked them up. It has been a real blessing.
We are working with Anya's behavior therapist and she is doing great. We still have a long way to go but we have already SIGNIFICANTLY reduced one of her most annoying behaviors. Her therapist warned us that it would get worse before it got better. Boy did it! I was physically shaking one day because her behaviors were CONSTANT. After that day it started dropping off pretty fast. Like I said, we still have a long way to go but it has been great to have the time and energy to focus on her now!
We are also having Evan evaluated for ADHD. Again, now that our attention isn't 110% on Oksana we are seeing things and working on things that we haven't had a chance to address because she demanded so much of us. Evan is such a great kid. Unfortunately he is showing a number of signs of the inattentive type of ADHD in his school work. I think it hid itself for a long time because he was homeschooled and I served as his external organizer. Now that he is becoming more and more independent it is affecting him in many areas. We have seen it in school, horseback riding, and we also learned that there is a link between ADD and Social Anxiety Disorder which is a huge issue for him. He will be evaluated in early October.
Amazing what we can do when we can focus on everyone in our family and not just one person....
One more random little update. Because it will be absolutely hilarious, I have decided to put Anya in a beauty pageant for people with special needs :). Her respite provider is going to help her on stage (this pageant has a helper for all of the contestants). I think she will need a talent. She will probably kick someone and stick her tongue out at them! She's pretty talented when it comes to misbehavior! I have to send in a head shot of her. My friend who does our family pictures really wants to do a head shot of her so I will post it on Thursday when we meet up with her. If nothing else this should give us something fun to focus on for awhile :).
Sunday, September 6, 2015
The end of day 4
I've had a lot of people how we are all feeling now that Oksana is gone. The title of this blog says it all. Honestly, we haven't been able to relax yet. Just when we realize the difference in our house, we also start to fear day 90. I know for a fact that I have PTSD from her. Larry and I are both seeing therapists now to deal with what has happened to us over the last 2 years (or maybe 5). I posted a message on my Parents of kids with Schizophrenia group on Facebook explaining to them that we can't relax for fear of day 90. They were all super supportive and assured me that they had similar experiences. I got ranges from 5-30 days when they were finally able to relax. It doesn't help that we are dealing with a whole bunch of behaviors out of Anya right now that we have no doubt is a direct result of the impact Oksana has had on her.
We haven't seen Oksana since Thursday. We will see her again this Thursday for a doctor's appointment. I am going to bring extra pull ups and pants. She will go to the doctor no matter what. If she chooses to wet herself and/or has any significant behaviors we will send her back to residential as soon as her appointment is over. If she can hold herself together we will take her out to lunch. I think going to lunch will be motivation enough to do good so I'm not too worried.
In other news, I worked my first day at the front desk of the boys' school on Friday. I really enjoyed it! My next day of work is Wednesday when I will work front desk in the morning and teach in the afternoon. I have been working hard on my class. I am creating my own curriculum so Pinterest has become my best friend! Clayton has also been a big help to me. There have been a couple of times that I suggested something and he gave me very good feedback that made me tweak my original idea. He has good insight into what works well for the kids that has been beneficial to me. I just have to be sure to sort out what is good information, and what is a teenager who is too opinionated :)!
I promise I will get some pictures on here soon! I've been lacking in that department lately. You can probably tell that I ditched the 365 day photo project too. It just got too crazy here. I did do a photo scavenger hunt that was tons of fun. We are getting ready to start another one. My whole family loves helping me find the items on my list. I'll share the next one with you.
One more thing before I post this. Thank you to all of you who have commented and encouraged us. We truly appreciate it.
We haven't seen Oksana since Thursday. We will see her again this Thursday for a doctor's appointment. I am going to bring extra pull ups and pants. She will go to the doctor no matter what. If she chooses to wet herself and/or has any significant behaviors we will send her back to residential as soon as her appointment is over. If she can hold herself together we will take her out to lunch. I think going to lunch will be motivation enough to do good so I'm not too worried.
In other news, I worked my first day at the front desk of the boys' school on Friday. I really enjoyed it! My next day of work is Wednesday when I will work front desk in the morning and teach in the afternoon. I have been working hard on my class. I am creating my own curriculum so Pinterest has become my best friend! Clayton has also been a big help to me. There have been a couple of times that I suggested something and he gave me very good feedback that made me tweak my original idea. He has good insight into what works well for the kids that has been beneficial to me. I just have to be sure to sort out what is good information, and what is a teenager who is too opinionated :)!
I promise I will get some pictures on here soon! I've been lacking in that department lately. You can probably tell that I ditched the 365 day photo project too. It just got too crazy here. I did do a photo scavenger hunt that was tons of fun. We are getting ready to start another one. My whole family loves helping me find the items on my list. I'll share the next one with you.
One more thing before I post this. Thank you to all of you who have commented and encouraged us. We truly appreciate it.
Thursday, September 3, 2015
Back in Residential
Today is day 1 of 90 days in residential.
Yesterday Oksana saw her psychiatrist and she asked for a blood draw to get Lithium levels. We went first thing this morning since it had to be done fasting. She was very mad at me because I made her walk by herself in and out of the building. When she got to the car, after much screaming and crying, she chose to hit me, hit herself, bite herself, rip her glasses off and bite them, etc. It was a good reminder why we are doing this. We got to the residential center at 10. I dropped her off at school (which is on the campus of the residential center) and then went to an intake meeting. The meeting went well. Our Crider and Regional center workers were there. We all talked about the issues we had last time and how things would be different this time. We got to see her room and we discussed things like the best way to bathe her, how she takes meds, when we will be visiting, etc. We both felt confident when we left. It was a good meeting.
After that it was about 11:30. Oksana was due to see her OT and PT at Ranken Jordan at 2:00. She is seeing them monthly right now just so they can keep an eye on her while she isn't going weekly. Since the residential center is 40 minutes from home, I stayed behind and hung out in the area. I got some lunch and strolled around some stores before heading back there at about 1:15 to get her. Her teacher had told me she would take her to the bathroom right before she left. On the way to Ranken Jordan I asked if she had gone to the bathroom. She said she had tried but couldn't. I told her that was fine and we would just try again when we got there. I then asked her if she was dry and she said no. I don't know if I have mentioned this before but her new behavior is peeing herself. She can totally control it and has shown us that over and over again but chooses to pee herself instead. We currently have her in pull ups only because she was peeing on furniture and car seats. So I told her that I didn't understand how it is possible that she couldn't go 15 minutes earlier but suddenly she had to go so bad that she had to wet herself. When we got there I discovered that she had peed through her pull up all over the car seat. I pulled up to the front door of Ranken Jordant, got out, told the receptionist that we were cancelling because my daughter chose to pee herself, and left.
She was MAD! I got called every name in the book, she starting hitting herself on the head, ripping off her glasses, etc. I explained that she chose to pee herself and so she could not go to therapy because they can't have her sitting on their equipment with wet pants. She decided it was all my fault and made sure to tell me how glad she was that she didn't have to be with me tonight. It took everything in me not to tell her that at that moment the feeling was very mutual! I took her back to the residential center and handed her over to them screaming and carrying on. I just kissed her, said goodbye and walked away.
I was supposed to go get her again tomorrow for a well visit with her pediatrician but I rescheduled it. I'm taking a week off from seeing her so I can breathe. I'll go back to get her Thursday of next week to take her to the doctor. I told her that if she stayed dry and behaved herself I would love to take her to lunch, but if not she would go to the doctor and go immediately back to residential. I think after not seeing her for a week and having the incentive of lunch I won't have any problem with her.
Our plan is to see her once a week. Last time we tried to go 2-3 times a week but we couldn't relax at all like that. It was crazy trying to coordinate child care and all of our other activities with visits that took 3 hours including travel. Half the time she didn't even care we were there and sometimes even ended our visits early. This time we are focusing on our marriage and our other 3 kids while she is gone. We have registered for a Weekend to Remember marriage conference and we are SO excited to get away for a weekend! We are also planning to take our other kids on a vacation. We haven't officially decided where yet but we are considering Great Wolf Lodge.
I am hopeful that this will be a good thing for all of us.
Yesterday Oksana saw her psychiatrist and she asked for a blood draw to get Lithium levels. We went first thing this morning since it had to be done fasting. She was very mad at me because I made her walk by herself in and out of the building. When she got to the car, after much screaming and crying, she chose to hit me, hit herself, bite herself, rip her glasses off and bite them, etc. It was a good reminder why we are doing this. We got to the residential center at 10. I dropped her off at school (which is on the campus of the residential center) and then went to an intake meeting. The meeting went well. Our Crider and Regional center workers were there. We all talked about the issues we had last time and how things would be different this time. We got to see her room and we discussed things like the best way to bathe her, how she takes meds, when we will be visiting, etc. We both felt confident when we left. It was a good meeting.
After that it was about 11:30. Oksana was due to see her OT and PT at Ranken Jordan at 2:00. She is seeing them monthly right now just so they can keep an eye on her while she isn't going weekly. Since the residential center is 40 minutes from home, I stayed behind and hung out in the area. I got some lunch and strolled around some stores before heading back there at about 1:15 to get her. Her teacher had told me she would take her to the bathroom right before she left. On the way to Ranken Jordan I asked if she had gone to the bathroom. She said she had tried but couldn't. I told her that was fine and we would just try again when we got there. I then asked her if she was dry and she said no. I don't know if I have mentioned this before but her new behavior is peeing herself. She can totally control it and has shown us that over and over again but chooses to pee herself instead. We currently have her in pull ups only because she was peeing on furniture and car seats. So I told her that I didn't understand how it is possible that she couldn't go 15 minutes earlier but suddenly she had to go so bad that she had to wet herself. When we got there I discovered that she had peed through her pull up all over the car seat. I pulled up to the front door of Ranken Jordant, got out, told the receptionist that we were cancelling because my daughter chose to pee herself, and left.
She was MAD! I got called every name in the book, she starting hitting herself on the head, ripping off her glasses, etc. I explained that she chose to pee herself and so she could not go to therapy because they can't have her sitting on their equipment with wet pants. She decided it was all my fault and made sure to tell me how glad she was that she didn't have to be with me tonight. It took everything in me not to tell her that at that moment the feeling was very mutual! I took her back to the residential center and handed her over to them screaming and carrying on. I just kissed her, said goodbye and walked away.
I was supposed to go get her again tomorrow for a well visit with her pediatrician but I rescheduled it. I'm taking a week off from seeing her so I can breathe. I'll go back to get her Thursday of next week to take her to the doctor. I told her that if she stayed dry and behaved herself I would love to take her to lunch, but if not she would go to the doctor and go immediately back to residential. I think after not seeing her for a week and having the incentive of lunch I won't have any problem with her.
Our plan is to see her once a week. Last time we tried to go 2-3 times a week but we couldn't relax at all like that. It was crazy trying to coordinate child care and all of our other activities with visits that took 3 hours including travel. Half the time she didn't even care we were there and sometimes even ended our visits early. This time we are focusing on our marriage and our other 3 kids while she is gone. We have registered for a Weekend to Remember marriage conference and we are SO excited to get away for a weekend! We are also planning to take our other kids on a vacation. We haven't officially decided where yet but we are considering Great Wolf Lodge.
I am hopeful that this will be a good thing for all of us.
Saturday, August 29, 2015
A new stage of life
In a recent job interview (I will explain that in a minute), I was asked where I see myself in the next 3-5 years. My answer was something I had not really realized up to this point. I am in a new stage of life. For the first time I'm not caring for babies, newly adopted children, or homeschooling 5 days a week. I actually have some TIME!
The homeschool program the boys go it is moving to 3 days a week for 7-12 grade. That means a couple of things for me. One is that I have 3 full days to myself when the girls are also in school! The second thing is that tuition is higher. Up to this point we have been very blessed to be able to pay tuition. The first year Larry had a different job and made more money. The second year a family member helped us with a large chunk of the tuition. This year we literally have no idea how we will pay for them to go to school. Pulling them out will never be an option. This is the best thing that has ever happened to them related to their education.
When I realized that I had both 3 days alone, and no money, I decided it was time to look for a part time job. I am picky....very picky. We have a unique family and not every job will work for us. There was one job I would have loved, but the hours were evenings and weekends. We decided there was no way I could do that. I've been searching for a couple of months and recently learned that one of our local school districts was looking for a parent educator. If you aren't familiar with that, it is through a Parent's As Teachers program. It is designed for families with children birth-3. They are assigned a parent educator who comes into their home. This parent educator is there to support the parents, encourage them, help them find developmentally appropriate activities, answer questions, and identify any early intervention needed. I think I would love it. It's only 17 hours and you set most of your own schedule. I interviewed a couple of weeks ago. Unfortunately just yesterday I discovered that it payed too much for us to qualify for Medicaid for Oksana so if they call me to offer me the job I will have to turn it down. Infuriating. Which brings me to the next opportunity I have been given.
One of my first thoughts when I realized that I wanted to see about getting a job was to go to the boys' school to see if they needed help. I'm simply looking for help paying tuition so it just made sense that anything I did there would knock off some tuition and help out. I've been talking with them for a couple of months about some opportunities but nothing quite worked out. They talked to me about a preschool teaching position but after praying about it I realized that I am in a stage of life where the preschool age is just not a place I want to be. They want people with a passion for what they do. I was not feeling the passion....at all! Then a couple of weeks later I found out they needed someone to teach their high school public speaking class. I inquired about it, talked to Larry about it, and talked to Clayton since he will be one of my students. We all seemed to feel it was a good opportunity so I took it! It is only 3 days a week from 2:30-3:45. A couple of days after that they also offered me a front desk position. I will work from 8am-12 the same three days helping out as a receptionist. I'm exited for this opportunity to help their school and help us pay tuition!
In another area of life that is entering a new stage, I have a kid meeting some big "growing up" milestones that bring in a whole new season of parenting! In June Clayton turned 16. Last week he got his drivers license and started a new job! This is so strange! He drives himself to work. That's just weird. Then we went just Friday to get him a checking account! I personally love this stage of parenting, but it is scary too! There are all kinds of new experiences and emotions to deal with in all of us!
The homeschool program the boys go it is moving to 3 days a week for 7-12 grade. That means a couple of things for me. One is that I have 3 full days to myself when the girls are also in school! The second thing is that tuition is higher. Up to this point we have been very blessed to be able to pay tuition. The first year Larry had a different job and made more money. The second year a family member helped us with a large chunk of the tuition. This year we literally have no idea how we will pay for them to go to school. Pulling them out will never be an option. This is the best thing that has ever happened to them related to their education.
When I realized that I had both 3 days alone, and no money, I decided it was time to look for a part time job. I am picky....very picky. We have a unique family and not every job will work for us. There was one job I would have loved, but the hours were evenings and weekends. We decided there was no way I could do that. I've been searching for a couple of months and recently learned that one of our local school districts was looking for a parent educator. If you aren't familiar with that, it is through a Parent's As Teachers program. It is designed for families with children birth-3. They are assigned a parent educator who comes into their home. This parent educator is there to support the parents, encourage them, help them find developmentally appropriate activities, answer questions, and identify any early intervention needed. I think I would love it. It's only 17 hours and you set most of your own schedule. I interviewed a couple of weeks ago. Unfortunately just yesterday I discovered that it payed too much for us to qualify for Medicaid for Oksana so if they call me to offer me the job I will have to turn it down. Infuriating. Which brings me to the next opportunity I have been given.
One of my first thoughts when I realized that I wanted to see about getting a job was to go to the boys' school to see if they needed help. I'm simply looking for help paying tuition so it just made sense that anything I did there would knock off some tuition and help out. I've been talking with them for a couple of months about some opportunities but nothing quite worked out. They talked to me about a preschool teaching position but after praying about it I realized that I am in a stage of life where the preschool age is just not a place I want to be. They want people with a passion for what they do. I was not feeling the passion....at all! Then a couple of weeks later I found out they needed someone to teach their high school public speaking class. I inquired about it, talked to Larry about it, and talked to Clayton since he will be one of my students. We all seemed to feel it was a good opportunity so I took it! It is only 3 days a week from 2:30-3:45. A couple of days after that they also offered me a front desk position. I will work from 8am-12 the same three days helping out as a receptionist. I'm exited for this opportunity to help their school and help us pay tuition!
In another area of life that is entering a new stage, I have a kid meeting some big "growing up" milestones that bring in a whole new season of parenting! In June Clayton turned 16. Last week he got his drivers license and started a new job! This is so strange! He drives himself to work. That's just weird. Then we went just Friday to get him a checking account! I personally love this stage of parenting, but it is scary too! There are all kinds of new experiences and emotions to deal with in all of us!
Monday, August 24, 2015
Update
Sorry I kind of left you hanging with my last post. Since then the residential center that she was in earlier this year agreed to take her back. Unfortunately it was double the price that Crider pays (because of the high level of care). Crider decided to ask Regional Center to co fund it. Last week we got approval for her to be in residential for 3 months. We can always ask for more later but this is a start. From here we are waiting for all of the official paperwork to get all of the official signatures on it to move forward. Our hope is that it will be this week but we aren't holding our breath.
She was in respite this weekend. It was such a calm and relaxing weekend. When she got home the whole house changed. I knew this happened but I had never felt it as much as I did yesterday. Immediately I noticed that Larry and I became irritable and our tone of voice changed. I noticed that I was pacing. I noticed that our dinner was so much less peaceful. You can cut the tension here with a knife when she is in the house.
Three months will be a good start. It definitely isn't enough but one step at a time.
She was in respite this weekend. It was such a calm and relaxing weekend. When she got home the whole house changed. I knew this happened but I had never felt it as much as I did yesterday. Immediately I noticed that Larry and I became irritable and our tone of voice changed. I noticed that I was pacing. I noticed that our dinner was so much less peaceful. You can cut the tension here with a knife when she is in the house.
Three months will be a good start. It definitely isn't enough but one step at a time.
Sunday, August 9, 2015
Waiting again
I thought I had done enough waiting through 2 adoptions to last me a lifetime. Apparently not!
Medicaid refused Oksana. There are 2 main reasons. First, she has not had 30 consecutive days out of the home. She had 7 days in the hospital came home ONE day and was put in residential for 26 days. That doesn't count. :/ Second, we dared to plan for our future. We have a 401K with more than $1,000 in it.
The good news is we can fix those. The hardest one to fix is getting Oksana out of the home for 30 days since we can not find one single solitary place to take her. This is where the waiting comes in. We made the decision with our team to try to get her back in the residential center she was in before. They took her once, we just need to see if they will take her again. We had not been considering it up to this point because I did not like that place much for 2 main reasons...they did everything for her and made her regress terribly, and their psychiatrist drugged her into oblivion and sent her home as "better". This time will be a bit different because we will not be going through insurance. This is actually being funded by Crider, the mental health agency we are working with. Because of that Crider will be overseeing their care of her. They will write plans for the residential center that say they can not do everything for her. Now whether or not they will follow that is another story, but at least there will be oversight. Also, I will not be accepting services from their psychiatrist. I will pick her up for all of her psych appointments and take her to a psychiatrist I trust. Between those two things I think we can have a better experience there. Honestly, we have no choice. Not having Medicaid is not an option. We need that to move forward. The good thing about sending her back where she was as opposed to another place is that it is near us (40 minutes away versus the 2 and 4 hours away of the other places), she gets to keep her current school since it is on the same campus, she will be in a familiar place, and we do know they will take good care of her.
The question now becomes will they take her back? They are reviewing her file again. There is no guarantee they will take her just because she was there before. I am really hoping we have an answer on Monday. If they say yes we need to find out how long until they have a bed open. Once she is in we will start getting rid of our 401K so that after the 30 days we are ready to go with Medicaid. Once we have medicaid we can start working towards independent supported living.
If they say no. I don't even know. I can't even go there right now.
In the meantime I am going to be calling our Senator tomorrow and trying to set up a meeting to share our story with him and see if he can offer any help. On Wednesday Anya starts school and next Monday Oksana starts. I am beyond ready. Anya is bored out of her ever loving mind. She did great until about the last 2 weeks. She is DONE with summer. Because of Oksana being here all day every day we are trapped here which isn't helping the situation. Next week I have no respite so it should be very interesting.
Back to waiting for news. I'll update when I have it.
Medicaid refused Oksana. There are 2 main reasons. First, she has not had 30 consecutive days out of the home. She had 7 days in the hospital came home ONE day and was put in residential for 26 days. That doesn't count. :/ Second, we dared to plan for our future. We have a 401K with more than $1,000 in it.
The good news is we can fix those. The hardest one to fix is getting Oksana out of the home for 30 days since we can not find one single solitary place to take her. This is where the waiting comes in. We made the decision with our team to try to get her back in the residential center she was in before. They took her once, we just need to see if they will take her again. We had not been considering it up to this point because I did not like that place much for 2 main reasons...they did everything for her and made her regress terribly, and their psychiatrist drugged her into oblivion and sent her home as "better". This time will be a bit different because we will not be going through insurance. This is actually being funded by Crider, the mental health agency we are working with. Because of that Crider will be overseeing their care of her. They will write plans for the residential center that say they can not do everything for her. Now whether or not they will follow that is another story, but at least there will be oversight. Also, I will not be accepting services from their psychiatrist. I will pick her up for all of her psych appointments and take her to a psychiatrist I trust. Between those two things I think we can have a better experience there. Honestly, we have no choice. Not having Medicaid is not an option. We need that to move forward. The good thing about sending her back where she was as opposed to another place is that it is near us (40 minutes away versus the 2 and 4 hours away of the other places), she gets to keep her current school since it is on the same campus, she will be in a familiar place, and we do know they will take good care of her.
The question now becomes will they take her back? They are reviewing her file again. There is no guarantee they will take her just because she was there before. I am really hoping we have an answer on Monday. If they say yes we need to find out how long until they have a bed open. Once she is in we will start getting rid of our 401K so that after the 30 days we are ready to go with Medicaid. Once we have medicaid we can start working towards independent supported living.
If they say no. I don't even know. I can't even go there right now.
In the meantime I am going to be calling our Senator tomorrow and trying to set up a meeting to share our story with him and see if he can offer any help. On Wednesday Anya starts school and next Monday Oksana starts. I am beyond ready. Anya is bored out of her ever loving mind. She did great until about the last 2 weeks. She is DONE with summer. Because of Oksana being here all day every day we are trapped here which isn't helping the situation. Next week I have no respite so it should be very interesting.
Back to waiting for news. I'll update when I have it.
Saturday, July 25, 2015
Summer
Wow has this been a busy summer! Here are just a few of the things we have done:
- Vacation - Joni and Friends family camp again and it was just as amazing as last year only better because our dear friends, the Stumbos, were there! It is my happy place.
-Vacation Bible School - We LOVE VBS in our house. This was the first year that Anya was a part of it. I was her shadow. It got overwhelming for her by the end of the week but she had a blast.
- Horses, Horses, and more Horses - Evan was a camp counselor for 2 camps at the barn where he rides and he just finished his own camp today. He has worked so hard! His camp ended in a competition today. Now he is home and I doubt he will move from the couch until school starts!
- Backstage - The homeschool program that the boys go to is also a school of the arts. This summer Clayton got involved in backstage "stuff" (for lack of a better word)! He is with a team building, painting, and creating the props for 2 plays this summer. The first was Oliver and it was just last night. The second is The Screwtape Letters in a couple of weeks. It's been exhausting but he has really enjoyed it.
- Summer school - Both girls were in an extended school year program. Anya's ended a week ago and Oksana's ended yesterday. Anya has 2 1/2 weeks until she is back to school and Oksana has 3 weeks. Crazy!
- All of that doesn't even count the birthday parties, therapies, swimming, fireworks, NAMI walk, dinners with our small group, movies, etc.
I need school to start so we can recover from summer!
- Vacation - Joni and Friends family camp again and it was just as amazing as last year only better because our dear friends, the Stumbos, were there! It is my happy place.
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| Lake Michigan. It was COLD! |
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| We loved sharing the week with this couple! |
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| Evan being buried by the "sibs" (siblings of a child with a disability) |
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| She LOVED riding the horses! |
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| Crazy hair day! |
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| Anya's STM (short term missionary). She was Anya's one on one helper the whole week. She loved her! |
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| I didn't want to leave! |
-Vacation Bible School - We LOVE VBS in our house. This was the first year that Anya was a part of it. I was her shadow. It got overwhelming for her by the end of the week but she had a blast.
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| The music was her favorite part! |
- Horses, Horses, and more Horses - Evan was a camp counselor for 2 camps at the barn where he rides and he just finished his own camp today. He has worked so hard! His camp ended in a competition today. Now he is home and I doubt he will move from the couch until school starts!
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| Team Griffin at the competition! |
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| I generally don't like taking her to competitions because they are long and boring but this umbrella kept her well entertained! |
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| He is getting so big! How does this happen?! |
- Backstage - The homeschool program that the boys go to is also a school of the arts. This summer Clayton got involved in backstage "stuff" (for lack of a better word)! He is with a team building, painting, and creating the props for 2 plays this summer. The first was Oliver and it was just last night. The second is The Screwtape Letters in a couple of weeks. It's been exhausting but he has really enjoyed it.
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| Oliver backstage crew. Clayton is on the left in the khaki shorts. |
- Summer school - Both girls were in an extended school year program. Anya's ended a week ago and Oksana's ended yesterday. Anya has 2 1/2 weeks until she is back to school and Oksana has 3 weeks. Crazy!
- All of that doesn't even count the birthday parties, therapies, swimming, fireworks, NAMI walk, dinners with our small group, movies, etc.
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| Oksana's Angels at the NAMI Walk! |
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| The back of our shirts. |
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| We love our small group! |
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| We have been having dinner together once a month through the summer before we start meeting weekly again. |
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| My favorite picture from the fireworks. This was her first big display! |
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| We don't usually see movies much but we have been trying to give the boys lots of time alone with us. So far this summer we have seen Minions, Jurasic World, and Antman. |
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| 13 years old! He got a Gryffindor Robe (Harry Potter). |
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| Birthday Party for our niece. |
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| The school Oksana goes to now doesn't have a physical therapist so we are doing homebound PT. Her PT happens to be a friend from church. We love her! |
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| Besides that we are also in private OT and PT. She's regressed so much that she is working on holding her head up :(. |
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| These two are 2 peas in a pod! |
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| SIXTEEN!!!! |
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| This pretty much describes us :). |
I need school to start so we can recover from summer!
Saturday, July 18, 2015
Back with News
It has been awhile since I posted. A lot has happened. I almost updated a few weeks ago but since then we have had some developments that I wanted to share with you so I waited until we had more information. I had to go back to see where I left off.....Life since the no. Yeah, I was optimistic then that we were seeing improvement and may have found a system that would work. Little did I know then that things could actually get worse.
I don't have time for details. To make a very long story short Oksana spends most of every single day screaming. She wants us to do everything for her and when we don't, we pay for it. She is even back in pull ups because she is peeing and pooping her pants again. She is to the point that we can't take her anywhere with us because of her behaviors. Even her caseworkers from the mental health center had to stop taking her out of the home to work with her because of her behaviors. Our whole family is sinking and we are starting to see the effects of living like this in our other kids. Larry and I have been struggling horribly for a good long time now but seeing our kids be impacted was the straw that broke the camel's back.
After talking to the amazing professionals in our life that are helping us, it was decided that a meeting would be called to discuss a plan for removing Oksana from our home. We are absolutely not disrupting. We will continue to be her advocates, her support, and her family.....she just will not live with us.
I'm getting ahead of myself a bit here though because we don't have a firm plan yet. The meeting included our caseworker from our mental health center, regional center (state agency focused on developmental disabilities), and FACT which is an advocacy group. Each of those people have worked with us for a good long time now and have done absolutely all they can to help us and help Oksana. They each brought their supervisors. We also had someone from children's division there. Yes, we invited them. No, they aren't interested in taking our kid. In fact they were incredibly supportive and helpful. Oksana's therapist was there and we also invited an advocate from NAMI. 11 people in all including us. That is a huge meeting for something like this!
We started by focusing on what is going on right now. What we have done to try to help her. What services we have been refused, and how she has impacted the rest of the family. Every organization expressed that they had done everything they could and it wasn't working. Everyone agreed that keeping her in our house was not beneficial to anyone at this point....including her.
So here is where that leaves us. Children's division is pushing through our medicaid application and we should be approved within a week. Once we have that we can get access to funding to start to make plans for the future. The "big wigs" might ask us to do another in home intervention (like staffing our house 24/7 with a caregiver for her). Everyone agreed that is a huge mistake. It is their job to convince the big wigs that it is a big mistake so they are willing to just go to what we are all requesting. We are requesting that Oksana go into independent supported living (ISL). An ISL is a house in a neighborhood just like yours. She will live there with a roommate or two and 24/7 care. We will still take her to all of her doctor's appointments, be very involved in her life, take her to dinner, bring her home for holidays, etc. The only difference is she won't live in our home anymore. The staff in the ISL will be trained specifically for Oksana and she will have a very detailed and specialized plan that they will need to follow. All of her current supports will push in to her house there just like they do here.
Again, I'm getting a bit ahead of myself here. There are many steps before we get to that point. They told me it could be months before we can have her out of our house. We told them we can't do months. They are also looking at options to either remove her from our home, or get us more help, while we get through all of these steps. Everyone left the meeting with a job to do. We are meeting again in 2 weeks to see where we are and what still needs to be done.
I'll keep updating through this. I will also do a much more enjoyable update on our family soon with some pictures. Thank you to all of you who have commented and contacted me. Some of you don't even know us and you have been a wonderful support and encouragement. I truly appreciate it!
I don't have time for details. To make a very long story short Oksana spends most of every single day screaming. She wants us to do everything for her and when we don't, we pay for it. She is even back in pull ups because she is peeing and pooping her pants again. She is to the point that we can't take her anywhere with us because of her behaviors. Even her caseworkers from the mental health center had to stop taking her out of the home to work with her because of her behaviors. Our whole family is sinking and we are starting to see the effects of living like this in our other kids. Larry and I have been struggling horribly for a good long time now but seeing our kids be impacted was the straw that broke the camel's back.
After talking to the amazing professionals in our life that are helping us, it was decided that a meeting would be called to discuss a plan for removing Oksana from our home. We are absolutely not disrupting. We will continue to be her advocates, her support, and her family.....she just will not live with us.
I'm getting ahead of myself a bit here though because we don't have a firm plan yet. The meeting included our caseworker from our mental health center, regional center (state agency focused on developmental disabilities), and FACT which is an advocacy group. Each of those people have worked with us for a good long time now and have done absolutely all they can to help us and help Oksana. They each brought their supervisors. We also had someone from children's division there. Yes, we invited them. No, they aren't interested in taking our kid. In fact they were incredibly supportive and helpful. Oksana's therapist was there and we also invited an advocate from NAMI. 11 people in all including us. That is a huge meeting for something like this!
We started by focusing on what is going on right now. What we have done to try to help her. What services we have been refused, and how she has impacted the rest of the family. Every organization expressed that they had done everything they could and it wasn't working. Everyone agreed that keeping her in our house was not beneficial to anyone at this point....including her.
So here is where that leaves us. Children's division is pushing through our medicaid application and we should be approved within a week. Once we have that we can get access to funding to start to make plans for the future. The "big wigs" might ask us to do another in home intervention (like staffing our house 24/7 with a caregiver for her). Everyone agreed that is a huge mistake. It is their job to convince the big wigs that it is a big mistake so they are willing to just go to what we are all requesting. We are requesting that Oksana go into independent supported living (ISL). An ISL is a house in a neighborhood just like yours. She will live there with a roommate or two and 24/7 care. We will still take her to all of her doctor's appointments, be very involved in her life, take her to dinner, bring her home for holidays, etc. The only difference is she won't live in our home anymore. The staff in the ISL will be trained specifically for Oksana and she will have a very detailed and specialized plan that they will need to follow. All of her current supports will push in to her house there just like they do here.
Again, I'm getting a bit ahead of myself here. There are many steps before we get to that point. They told me it could be months before we can have her out of our house. We told them we can't do months. They are also looking at options to either remove her from our home, or get us more help, while we get through all of these steps. Everyone left the meeting with a job to do. We are meeting again in 2 weeks to see where we are and what still needs to be done.
I'll keep updating through this. I will also do a much more enjoyable update on our family soon with some pictures. Thank you to all of you who have commented and contacted me. Some of you don't even know us and you have been a wonderful support and encouragement. I truly appreciate it!
Monday, June 8, 2015
Life since the no
Let me tell you....that no from the state hospital was hard. If you remember, they said they couldn't take her because with the current group of kids they have they didn't feel they could keep her safe. We had a very strong suspicion that this was always going to be their excuse. Well the next morning I got a call from their intake coordinator. It seems that we were right, they are never going to take her. She apologized profusely and took full responsibility for why we have been drug along for 2 months thinking we would get help when they never intended to help us. In the end she was trying hard to help us and it backfired. I truly appreciate her honesty and her desire to help us, but it sure did cause us a lot of pain.
Once we knew that the state hospital was no longer an option we had to figure out how to live with her in our house and not lose our minds. After a good meeting with our team we made some changes. We hired a second respite provider and between our two incredibly awesome providers we had someone here for most of the hours that I was by myself. We also pleaded with her out of home respite to help us and they have been awesome. Oksana is only supposed to be there 1 weekend every other month but they have been calling us any time someone doesn't show up so that we can have some extra time. We have also done some room renovations to increase safety. We have reduced her room down to things that are safe, can't be destroyed, etc. Her room now has a lot of soft items like bean bag chairs and body pillows. It also has sensory items, magazines (so she can rip them up if she is angry), and we are putting some soft rugs on her wall as wall hangings so they are soft and sensory. We also turned her door into a dutch door so we can keep the bottom closed and the top open to keep a better eye on her.
On top of all of that we enrolled her in 2 weeks of summer camp. This week is her first week. The summer camp has been so accommodating and Crider is even pushing in there to make sure she is successful. This week the rest of our family is doing VBS at church. Since VBS is only until noon it gives me a few extra hours to get stuff done like grocery shopping and cleaning before Oksana comes home at 3. Today was her first day and she loved it! Tomorrow they are taking her swimming. She is so excited! Next week she will be going to another week of camp and one of her respite providers is going to care for her while we go on vacation. Now....I know this could make some eyebrows raise. I'll just say that until you understand what we have lived with don't judge. We all need a break and my other 3 kids need a vacation where no one will scream at them or try to attack anyone or ruin their fun. Oksana knows her respite worker very well and she is happy to be at camp at getting all of the attention for a whole week. I assure you she isn't hurting any. The rest of us are going to the family camp that we went to last year with Joni and Friends.
When we get home from family camp Oksana will start summer school at her new school and Anya will start summer school here.
After we got some of these things in place we noticed something interesting. Oksana was calming down. Now, she still has plenty of issues, but tomorrow will be 1 whole week since she tried to physically attack anyone. I honestly think that we took the upper hand back and she is shocked. I think she is finally figuring out that we are serious when we say she can not continue to hurt us. Now that I don't feel like a prisoner in my own house anymore I am also feeling much better. The changes we have made have been good for all of us.
I want to briefly answer a couple of questions that I got. One was if we could do long term respite care. There really isn't anything like that around here. The best we could do is bring respite into our house. Another was if we have considered an out of state placement. We absolutely have. In fact, there is a place in Wisconsin that we think would be fantastic for her but funding is an issue. Keep those questions coming because they keep me thinking ;)!
In other news today is our 19 year wedding anniversary! We are going out Friday night to spend some time alone after a crazy week of VBS, and before our vacation. I have no idea what we will do but we will be alone!!
I'll check back again soon!
Once we knew that the state hospital was no longer an option we had to figure out how to live with her in our house and not lose our minds. After a good meeting with our team we made some changes. We hired a second respite provider and between our two incredibly awesome providers we had someone here for most of the hours that I was by myself. We also pleaded with her out of home respite to help us and they have been awesome. Oksana is only supposed to be there 1 weekend every other month but they have been calling us any time someone doesn't show up so that we can have some extra time. We have also done some room renovations to increase safety. We have reduced her room down to things that are safe, can't be destroyed, etc. Her room now has a lot of soft items like bean bag chairs and body pillows. It also has sensory items, magazines (so she can rip them up if she is angry), and we are putting some soft rugs on her wall as wall hangings so they are soft and sensory. We also turned her door into a dutch door so we can keep the bottom closed and the top open to keep a better eye on her.
On top of all of that we enrolled her in 2 weeks of summer camp. This week is her first week. The summer camp has been so accommodating and Crider is even pushing in there to make sure she is successful. This week the rest of our family is doing VBS at church. Since VBS is only until noon it gives me a few extra hours to get stuff done like grocery shopping and cleaning before Oksana comes home at 3. Today was her first day and she loved it! Tomorrow they are taking her swimming. She is so excited! Next week she will be going to another week of camp and one of her respite providers is going to care for her while we go on vacation. Now....I know this could make some eyebrows raise. I'll just say that until you understand what we have lived with don't judge. We all need a break and my other 3 kids need a vacation where no one will scream at them or try to attack anyone or ruin their fun. Oksana knows her respite worker very well and she is happy to be at camp at getting all of the attention for a whole week. I assure you she isn't hurting any. The rest of us are going to the family camp that we went to last year with Joni and Friends.
When we get home from family camp Oksana will start summer school at her new school and Anya will start summer school here.
After we got some of these things in place we noticed something interesting. Oksana was calming down. Now, she still has plenty of issues, but tomorrow will be 1 whole week since she tried to physically attack anyone. I honestly think that we took the upper hand back and she is shocked. I think she is finally figuring out that we are serious when we say she can not continue to hurt us. Now that I don't feel like a prisoner in my own house anymore I am also feeling much better. The changes we have made have been good for all of us.
I want to briefly answer a couple of questions that I got. One was if we could do long term respite care. There really isn't anything like that around here. The best we could do is bring respite into our house. Another was if we have considered an out of state placement. We absolutely have. In fact, there is a place in Wisconsin that we think would be fantastic for her but funding is an issue. Keep those questions coming because they keep me thinking ;)!
In other news today is our 19 year wedding anniversary! We are going out Friday night to spend some time alone after a crazy week of VBS, and before our vacation. I have no idea what we will do but we will be alone!!
I'll check back again soon!
Wednesday, June 3, 2015
They said no
I'm shocked. Seriously shocked. They claim that with the group of kids currently there they don't feel they can keep Oksana safe because of her other disabilities. IT'S A PSYCH HOSPITAL! When will they ever have just the right kids that they feel she can be safe with?! It's crazy.
After I ugly cried we had a meeting with our team (Crider Center, Regional Center, and FACT) to decide what to do next. Crider is going to start coming in 3-5 days a week to take Oksana and work with her for about an hour. They are mostly doing this outside of our home since that is what I requested so the rest of us could relax. We are also having someone come to our home next week to meet us who is some well known autism expert. She has created a program called Rage to Reason which involves 6-8 weeks of intensive in home behavior therapy. She got a grant to do the program with 7 families and it looks like we might be one of them.
I also contacted NAMI. I'm going to call their advocate tomorrow and ask her for some guidance as I contacting our Senators about our story and what the state hospital, as well as every other place on earth, has done to us. This might not change anything for Oksana but maybe, just maybe, another family won't have to go through this. My friend who works at NAMI said they have tried to convince so many parents in similar situations to take action like this and they always say "What good is that going to do my kid?" Well, you know what? It's not going to do anyone any good if we do nothing. I don't want to do this. I am exhausted. I barely have it in me to make it through each day much less fight the system, but I don't have a choice. This can't keep happening to us or to anyone else.
Our Crider worker is coming at 10am tomorrow to take her for an hour. We weren't sure we were going to do tomorrow until she found out that Oksana told me she was going to slap my head off. I guess she figured I could use an hour off!
After I ugly cried we had a meeting with our team (Crider Center, Regional Center, and FACT) to decide what to do next. Crider is going to start coming in 3-5 days a week to take Oksana and work with her for about an hour. They are mostly doing this outside of our home since that is what I requested so the rest of us could relax. We are also having someone come to our home next week to meet us who is some well known autism expert. She has created a program called Rage to Reason which involves 6-8 weeks of intensive in home behavior therapy. She got a grant to do the program with 7 families and it looks like we might be one of them.
I also contacted NAMI. I'm going to call their advocate tomorrow and ask her for some guidance as I contacting our Senators about our story and what the state hospital, as well as every other place on earth, has done to us. This might not change anything for Oksana but maybe, just maybe, another family won't have to go through this. My friend who works at NAMI said they have tried to convince so many parents in similar situations to take action like this and they always say "What good is that going to do my kid?" Well, you know what? It's not going to do anyone any good if we do nothing. I don't want to do this. I am exhausted. I barely have it in me to make it through each day much less fight the system, but I don't have a choice. This can't keep happening to us or to anyone else.
Our Crider worker is coming at 10am tomorrow to take her for an hour. We weren't sure we were going to do tomorrow until she found out that Oksana told me she was going to slap my head off. I guess she figured I could use an hour off!
Tuesday, June 2, 2015
Praying Hard
Oksana was released from the hospital on Friday despite the fact that we strongly disagreed that she was well. Unfortunately insurance has the last say. The social worker called the state hospital that we have been trying for months to get into and told them they needed a bed. The intake manager at the hospital told him they had a bed (funny since we had always been told they didn't) but when she found out it was Oksana she started to backpedal. I was IRATE. We had called this woman tirelessly for months trying to get Oksana in and it seems they were passing her up when beds came available. The reason is that they don't normally take kids with other disabilities. The thing is we had already been through a process months ago to determine if they would be willing to make an exception for her considering the severity of her mental illness, and they said they would take her when they had a bed available. Our Crider and Regional Center caseworkers literally worked non stop for 2 days trying to find her a placement before the hospital released her. We all knew she wasn't ready to come home. In the end they came up with nothing. They had called the state hospital a couple of times and their calls weren't being returned.
We picked her up just in time to send her to bed Friday night. After she went to bed her respite center called. They had a kid who didn't show up and they wanted to know if she wanted to come in the morning and spend Saturday and Sunday with them. Saturday morning we got up and went to the NAMI walk and then took her to respite. Her time there was rough. She came home Sunday evening and our in home respite provider put her to bed so we could go have dinner with friends. She attacked the respite provider and she sent her to bed early. The next day I had a respite worker from her respite center come spend about 5 hours with me during the day to give me an extra set of hands. This threw Oksana off so she did fine while she was there as she thought it was neat to have someone else in the house. At dinner last night she completely lost it and went into an hour long rage that ended in her being sent to bed early. This morning she seemed Ok but quickly turned when her breakfast didn't do what she wanted it to. That was a 2 hour rage in which I had to remove Anya to keep her safe. This afternoon we are headed to see the psychiatrist which is just about the only reason I didn't take her back to the hospital today.
So, after all of that, this is where the prayer comes in. I called the state hospital this morning. I left a message telling them that I was currently in the basement with my 8 year old to keep her safe from Oksana who was just released from her 5th inpatient setting since February on Friday and I needed them to call me NOW and give me some answers. Much to my surprise she did. I gave her a play by play of what had happened and they are meeting with the medical director this afternoon to see if they can take her. This HAS to happen. I have no idea what else to do.
We picked her up just in time to send her to bed Friday night. After she went to bed her respite center called. They had a kid who didn't show up and they wanted to know if she wanted to come in the morning and spend Saturday and Sunday with them. Saturday morning we got up and went to the NAMI walk and then took her to respite. Her time there was rough. She came home Sunday evening and our in home respite provider put her to bed so we could go have dinner with friends. She attacked the respite provider and she sent her to bed early. The next day I had a respite worker from her respite center come spend about 5 hours with me during the day to give me an extra set of hands. This threw Oksana off so she did fine while she was there as she thought it was neat to have someone else in the house. At dinner last night she completely lost it and went into an hour long rage that ended in her being sent to bed early. This morning she seemed Ok but quickly turned when her breakfast didn't do what she wanted it to. That was a 2 hour rage in which I had to remove Anya to keep her safe. This afternoon we are headed to see the psychiatrist which is just about the only reason I didn't take her back to the hospital today.
So, after all of that, this is where the prayer comes in. I called the state hospital this morning. I left a message telling them that I was currently in the basement with my 8 year old to keep her safe from Oksana who was just released from her 5th inpatient setting since February on Friday and I needed them to call me NOW and give me some answers. Much to my surprise she did. I gave her a play by play of what had happened and they are meeting with the medical director this afternoon to see if they can take her. This HAS to happen. I have no idea what else to do.
Tuesday, May 26, 2015
365 Day Photo Challenge
I've got some catching up to do!
May 12-26
May 12-26
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| This little guy was hanging out in our garage on Larry's air compressor. He wasn't scared of me at all. I got rather close to him and he didn't even flinch! |
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| Headed to Wisconsin for a weekend away at a retreat for moms of kids with special needs! |
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| In a beautiful park in Wisconsin |
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| We stopped at a chocolatier and tried some truffles! These are peanut butter and mint. |
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| Lake Michigan with some amazing clouds! You can't see it but there was a boat and a light house kind of thing out there. It was so pretty! |
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| At the retreat. Ellen, Gillian, and I all adopted from the same orphanage! |
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| A rose from my rose bush after a rain. If you look close you can see the dew on it. |
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| Evan in motion! |
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| The challenge this week was to take a picture you would be glad you took in 10 years. This is Clayton helping Anya to read. |
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| Last day of school parade! The two ladies with Oksana are her amazing para and teacher. They are incredible. |
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| Brothers are the best! |
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| I love this picture! Pure joy complete with her dress flying up in the air! |
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| Waiting in the ER to have Oksana admitted. |
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| After I get dressed and ready for my workout she got dressed and ready to workout with me. It was so hard to exercise when I was laughing so hard! |
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| Today was such a beautiful day so Anya and I went to a park and I hung out under a tree for awhile. Look at that blue! |
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