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!

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.