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!
7 comments:
First off, happy anniversary! Second, you totally deserve that vacation - and in a way Oksana is getting a vacation too, just in a different way. I hope she enjoys camp and summer school, and I do hope that she is able to hold onto that sense of calm you mentioned.
You so deserve a vacation and enjoy it. Hopefully this will be bring peace to the family and Oksana.
Enjoy your restful week.
Pat
Happy Anniversary! And happy vacation! I completely understand the need for your family members to get a rest. And Oksana will have fun too.
The reality is that Oksana's needs are not the same as the other family members. Her needs for a certain type of attention, emotional responses, etc. are not typical. And you have made a plan to address those needs in a little more clinical way than you would with your other children, both in the structure of her physical environment and in her plan of care. That is okay. Don't ever feel judged because your care of Oksana looks so different from your care of your other children. Her care might even look a little detached from a non-involved outside perspective. Her needs are such that "detached" does not hold the same meaning that it does to typically developing children. You are serving her needs in the most caring, focused,compassionate, and safe way that you can. You are to be admired. Your whole family is to be admired. Enjoy your well deserved respite.
There is no judgement here. None. Just support and prayers!
Long time reader here. Been meaning to post since you shared the videos of the girls. Somehow that made them, oksana especially, so much more real. Sweet girl. My heart breaks for her and you and your family. I had not been able to see her light in your words alone. I believed it was there but had not realized how much she was (is) just a darling little girl. I cannot fathom the pain and love you must experience. I sincerely hope you will continue to share and update us all on goings-on. Please know you all are in my prayers. God bless.
Do you mind if I ask my church to pray for your family? So often you guys are on my heart!
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