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 :).

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. 

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.

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!

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.

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. 

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.

Lake Michigan.  It was COLD!

We loved sharing the week with this couple!

Evan being buried by the "sibs" (siblings of a child with a disability)

She LOVED riding the horses!

Crazy hair day!

Anya's STM (short term missionary).  She was Anya's one on one helper the whole week.  She loved her!

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.

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!

Team Griffin at the competition!

I generally don't like taking her to competitions because they are long and boring but this umbrella kept her well entertained!

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.

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. 

Oksana's Angels at the NAMI Walk!

The back of our shirts.

We love our small group!

We have been having dinner together once a month through the summer before we start meeting weekly again.

My favorite picture from the fireworks.  This was her first big display!

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.

13 years old!  He got a Gryffindor Robe (Harry Potter).

Birthday Party for our niece.

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!

Besides that we are also in private OT and PT.  She's regressed so much that she is working on holding her head up :(.

These two are 2 peas in a  pod!

SIXTEEN!!!!

This pretty much describes us :).

I need school to start so we can recover from summer!