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!
13 comments:
Was thinking and praying while waiting for a update. I hope the next is a firm plan.
Pat
Not an easy decision, but certainly the best one for you all. You've given your 100% best, Erin, I know that. You couldn't have done anything more. You'll always be Oksana's mom, even if she doesn't live in your home. Love you, friend. Keep on keeping on.
Thank you so much for updating. I don't know your family personally, but I have been reading here for a long time and have much affection for your family. I made a comment on your last post which I deleted because I mentioned dissolution and as I don't have any experience of adoption, I was afraid my comment may have come across as ignorant or disrespectful - neither of which I intended!
I am so glad you have the people on your side that you do. I pray for continued support for your lovely family. It sounds like Oksana will be in very good hands in the home you described is planned for her.
If I lived closer (I am in Australia) I would love to offer you concrete support - i.e buy you coffee and have it delivered, make you all a home cooked meal on days you are frazzled etc. However, I can offer you long-distance hugs and will send up prayers for you all. Hang in there, this has to get better and hopefully it will very soon xx
You would certainly not be the first person to ask about ending the adoption! It comes up a lot when I share my story. It takes a lot to offend me :).
Erin, I'm sure I've said this before, but even though I have never met you or your family in person, getting to know you through this blog and on Facebook, I consider you a dear friend and, of course, a sister in Christ. My heart aches for what you are all going through right now, but at the same time it makes me happy to know that you have such amazing support people rallying around you! That is God working, and He will continue to work in all of your lives!
I will keep you all lifted up in prayer that this ISL plan works out ASAP. For all of your sakes, this not only sounds like an ideal thing, but it's what you all need. I know you all love Oksana, but you cannot keep living like this and God knows that; I believe wholeheartedly that He will do what needs to be done in this situation!
Never forget that if you need a listening ear, I'm just a chat window away on Facebook.
My sister lives in a similar sort of home, with roommates and a rotating staffer there 24/7 for about 3 days at a time and she loves it. She feels independent (she's an adult with Down syndrome) and has moved out but my parents are still her guardians and do things with her all the time. She can stay the night if she wants to but she always enjoys going back to her house. I really hope it all works out and soon, and that it ends up being a great thing all around!
I don't think I've ever commented before, but I've been reading your blog for years. I have the utmost respect for you and a gut-deep, abiding sympathy for what has long seemed an excruciatingly untenable situation. I must admit that I read this entry with a sense of enormous relief for your family. Oksana clearly needs help that is beyond the ability of any parent to give. Your love, patience, and forbearance has been superhuman. Know that you and yours are in my thoughts.
I do hope that it works out for you soon. I know you have done everything a family can do. You need this.
I have worked as an educational assistant at a specialized school, as a support worker, and as a short-term and long-term respite provider for several children with cognitive and behavioural challenges (most with a diagnosis of autism). Though I have not experienced the challenges as a mother, I have witnessed first-hand the stress these behaviours can place on parents and siblings. Though it is often a difficult decision, I can tell you that I have witnessed so much success for both the child and the families of children who go into some sort of respite situation. i sincerely hope your situation works out (though the 'system' often seems impossible to navigate), and that it is a positive one for your whole family!!!!
Thank you so much for the update
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Thank you for the update. I don't think I've ever posted before, but I've been praying for you and your family.
I've worked with families like yours for over 10 years. Making decisions to place their children outside the home for the safety of everyone. I've learned that sometimes parents love their children so much, that they must intrust them to others to get all their needs met. It does not make a parent a failure in any sense. I know not everyone you come across will see it that way, but I pray you will continue to stand strong regardless. I've thanked you before, but I thank you again for being so open to share your experiences. Understanding what families live like on a daily basis helps me to serve them better.
So glad you now have a plan being formulated. I have followed your journey for a long time, and you and your husband are my heroes. Two of my adopted children have very significant behavior issues that have impacted my other children tremendously, but not to the extent that Oksana's have affected yours. We struggle, but I can only imagine how much worse it has been for your family. Kudos to you for your bravery and your love for that precious girl. I am praying that it all works out quickly, and that the benefits to all of your family members become apparent quickly too.
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