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!
