Belgrade, Serbia Friday April 23, 2010
The weather is beautiful and I am feeling much better. It is 10:33am and Chad and Kira are still sleeping. No, they aren’t being lazy or giving themselves another day of rest. They are sleeping now, because they did not get sleep during the night. Sofia decided again yesterday, that she wanted to nap. She changed into her pajamas and climbed in bed around 3pm. After two hours of slumber, we woke her up. She went back to bed around 9pm. Kira, Chase and Seth went to bed around 10 and Chad I got to bed around 11.
At midnight, Sofia stood up and announced that she had peed the bed. We got her changed, cleaned up the bed and tucked her back in. She was having nothing to do with going back to sleep. At 5am, she was still banging her head on the wall and radiant heating and squealing the most high-pitched squeal you’ve ever heard. When Chad and I would tell her to stop (stati) or to be good or go to sleep, she would let out a deep raspy laugh and tell us that she did not want to be good or sleep. It was a long night!
We have these moments, where she is just hysterical and inconsolable and those moments are usually accompanied by violent outbursts that she finds amusing.
By the end of our second visit with her, I began to question whether or not she has autism. Last night, after all of the kids were in bed, I did some research. I am now absolutely certain that what we are seeing in her is institutional autism. In the middle of my research, I discovered that the world’s leading expert on institutional autism happens to be located in our county in Virginia! And…everything I have read indicates that most of the behaviors we are seeing will rapidly diminish once we are home. Thank you, God!
When the rough moments come, I find myself attempting to empathize with her. I can’t even imagine what she is going through, but this is the picture I paint for myself:
Five strange people that she has never heard of or seen before showed up and began referring to themselves as her family. The strangers do not understand her and they speak to her in a language she has never heard. After several days of coming into her home and visiting with her, the strangers took her away with them and began telling her awful things like, ‘no’ and ‘be good’ and ‘wait’. In less than a week, every single detail of her little world changed, and there is no one around that can answer any questions she might have about why this is happening.
I keep thinking that she must feel like she has been kidnapped. What would that be like? I would be horrified if a group of strangers that I could not communicate with took over my world.
While there are moments that it is very clear that she feels like she belongs with us and that she is a part of our family. There are also moments when I see fear and confusion take over her thought process. Would it be any different for you or me? Would I be able to peacefully sleep in a strange apartment, surrounded by strange people? Probably not.
I sit and look at her this morning and I know without a doubt that she is mine. That I love her. That God is going to use our family to change the course of her life. That God has a purpose for her life. That we are blessed to be a part of that purpose.
Side note: Any input on treating institutional autism and rhythmic movement disorder will be appreciated!
I’m praying for your family! You have a roller coaster ride ahead of you, but the end is so worth it! I know a little about institutional Autism and I’d be happy to talk to you about some of the motion stuff too. We deal with that with Xander. I’m certainly no expert, but I’ve learned to think outside the box and accept that Xander needs his world to be structured a little bit different in order for his body and his emotions to stay “calm”. I just know that you are going to see your precious daughter blossom in your family. I’ll be praying for you as you walk the road to get to that point!
praying for you and subscribing to this to get in in my e-mail!
you are handling a hard situation with grace! we will be praying for you. i have seen the benefits of the medicines clonidine and stattera on my kiddos who were severely neglected. clonidine works on the stress hormones emitted by kiddos who have not been comforted. (like adrenaline) this also makes them sleepy and helps them get there days and nights straight. strattera is an antidepressant that is also used for adhd but is not a stimulant. we have also seen improvement with time and consistency. we are behind you no matter what happens. rachel hagemeyer
Thank you so much for the update!!! We prayed over your house today…it was awesome how present the Holy Spirit was. Multiple people were in tears, several laughing…it was great. God is working hun:) Love you guys – Heather