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!

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.

365 Day Photo Challenge

I've got some catching up to do! 

May 12-26

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!

Headed to Wisconsin for a weekend away at a retreat for moms of kids with special needs!

In a beautiful park in Wisconsin

We stopped at a chocolatier and tried some truffles!  These are peanut butter and mint.

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!

At the retreat.  Ellen, Gillian, and I all adopted from the same orphanage!

A rose from my rose bush after a rain.  If you look close you can see the dew on it.

Evan in motion!

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.

Last day of school parade!  The two ladies with Oksana are her amazing para and teacher.  They are incredible.

Brothers are the best!

I love this picture!  Pure joy complete with her dress flying up in the air!

Waiting in the ER to have Oksana admitted.

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!

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!

Back at the hospital

We admitted Oksana again today.  Her self harm had escalated quite a bit and this morning she couldn't even go 1/2 an hour without hurting herself.  She also went after Anya 3 times so we decided she was not safe to be here and we took her in.  Thankfully they had an open bed and we only had to wait a few hours to get her in.  When we left she was attacking the nurse.  We will talk to the psychiatrist tomorrow morning to find out what the plan is this time.  Maybe, just maybe, this will be another step towards the state hospital.  When they do have an open bed I hope Oksana is the first one they consider.

A bunch of catching up to do

There are quite a few things happening over here!  I'm a fan of bullet points when there is a lot of information so here goes nothing:

• We had Anya's IEP last Monday.  She is a rock star.  Besides her rascally and stubborn ways she is a dream student.  She is such a smart cookie!  Now if she could just behave herself!!
• I went out of town last weekend!!  I still can't believe it!  It was so fun and relaxing.  I met Ellen in Wisconsin and we went to a retreat for moms of kids with special needs.  I got to meet some ladies that I knew on Facebook but had never met in person, and I made some new friends.  Larry and our respite provider (while he was at work) did an amazing job of holding down the fort here!

  

  All of us adopted from the same orphanage!  This was our first time meeting Gillian.  Ellen and I had a blast together!

• Anya turned 8 last week!  As you saw in my previous post, we got her a bike.  She also got tons of Elsa stuff and all of it sings.....all day....non stop......  Anya is a happy camper!  We, of course, went out for froyo to celebrate.  This girl could eat ice cream of any sort all day every day and never tire of it.  Even in an Elsa dress!
  
  
  
  
  
  
  
  
  
  
  
  
  
  
• Mother's Day here was not good.  Larry works on Sundays and the gift he got me wasn't going to arrive by then so I declared that I was not celebrating that day.  Well I'm glad I had decided against it anyway because Oksana had a rough day and my house looked like a bomb hit it.  I spent my day dealing with her and cleaning.  Not how one wants to spend Mother's Day!  
• My gift did come a few days later!  Do you remember that I told you I had a friend who had to do a haiku with a picture for her photography class?  Well she did this amazing picture of me and Anya and wrote such a beautiful haiku that Larry had it put on a huge canvas for me!
  
  
  
  
• We also had an IEP meeting for Oksana.  She is being moved to a school for kids with severe emotional and behavioral problems.  It is 40 minutes from our house.  She will be transported there every morning and afternoon.  It isn't ideal but there was no school in the district that could handle her and also give her a decent education.  The very good news about this is that she has been accepted into their summer school program so she will go there 5 days a week from June 22-July 24.  That is a HUGE relief to me!
• We are still waiting on the state hospital to have an open bed for Oksana.  They have no discharges even planned right now.  I still call them weekly to give them an update.  Right now she isn't unsafe enough to go back to the local hospital but she also isn't well enough to be functioning in life.  It's a horrible middle ground.  She really needs to have an long term placement to figure this out.
• On that note, we have made a very difficult decision.  One that we never wanted to consider but we now have to.  We have chosen to go on vacation this year without Oksana.  She is barely making it at home and if we bring her away she will make it a very challenging trip for all of us.  We are going to sign her up for a fun summer camp that can handle her and her respite provider is going to come stay with her for the week.  She already knows and really doesn't even care.  This gives our other 3 kids the chance to decompress and have fun.  Sadly that is something they have rarely been able to do for awhile now.
• We have our NAMI walk team together and it looks like there will be 26 of us!  I am so thrilled!  I'll post pictures after it is over.

I think that pretty much sums it up.  I'm hoping to post more regularly now that I have that out of the way!

365 Day Photo Challenge

I've lost count of days but this is May 2-11 :)

I am going to do another update post very soon.  Those are harder to write than these!

I love dandelions!

This is Remmy and he is not too thrilled with his bath!

I love this picture!

 There is a bit of a story behind this picture and the next one.  My friend is taking a photography class and she had an assignment to write a haiku for a picture.  I decided to do it too and have a little fun with it :).  I am currently doing a 21 Day Fix which is an exercise and clean eating program.  When i took this I had just started and the workouts were KILLING me!  This is my haiku for this picture of me doing a very exaggerated sit up and my boys eating junk food behind me:                  

Torture, agony
She clearly wants to kill me
Stronger, exercise

 And here is my "clean" dinner haiku.  At this point I had just started and was struggling with missing my sugary and pizza!

Clean eating, healthy
Tortilla, chicken, lettuce
Pizza is better

This is a flower that a neighbor gave Oksana and she gave it to me for Mother's Day.   Very sweet considering the rest of the day was not very good at all!!

The rascal got a bike for her birthday!  I'll share more about her birthday in the next post.  Right now all she does is sit on it and play with the tassels!

This is the pattern on a horse Evan rode.  He was beautiful!

Evan cleaning his bridle after his ride on an absolutely beautiful evening.

Bridles lined up at the barn.

365 Day Photo Challenge

Days 113-121

My friend asked what our dog looks like so I took this picture and actually quite liked it so I used it for my photo of the day.  This particular day the dog had driven me absolutely insane so don't let the cuteness deceive you.

This was so funny.  Anya is PETRIFIED of the dentist.  Oksana needed to go and for the first time Anya understood and believed me when I told her that only Oksana was getting her teeth cleaned.  Most times she sits in the corner whining in fear that they will come get her next but this time she was all up in what was happening giving commentary through the whole thing!

We got to see our friend Justin get baptized.  There is nothing cooler!

His passion.

Here is where I slacked off. I missed quite a few days of pictures so today Larry and I spent the day in the downtown area of our city and I took a bunch of pictures to catch up!

We had lunch on the patio of a restaurant overlooking the shops.

I had a BLTE...bacon, lettuce, tomato, fried egg...and fries.  It was yummy

I love all of the old buildings and little unique shops....

And random colorful chairs outside of the shops....

And I LOVE courtyards with decorative iron gates.  It reminds me of New Orleans!