A Puzzle

Okay.

Wow!

If I had known the response my previous post was going to bring, I would have shared videos LONG ago! Thank you! Thank you! Thank you! You have all encouraged me SO MUCH! To everyone who shared with me, to everyone who is praying, THANK YOU!! I read every comment, every email, every message. I read every link that was shared. I am so humbled to have so many friends on this journey with us. Vera is loved by so many...once again I stand amazed.

Vera was in the tub the other day and I was pondering some of your messages. I realized that I feel like I'm putting a puzzle together. I keep finding new pieces and I'm trying to fit pieces together that just don't seem to fit. It's like I'm starting with the middle pieces but I need to put together the edges first. You're all helping me put this puzzle together and I am so grateful.

I thought I'd try to answer some of your questions and share a little more. Maybe you can help me brainstorm some things I'm not thinking of. I wish you could all come over for coffee and let me pick your brains. I guess this is the next best thing.

So many of you mentioned sensory issues...I had not even considered that. I do not know a thing about sensory input/needs. Nada. I'm clueless. Many of you shared similar ideas that we're going to try. I'm looking at weighted blankets. They're a bit pricey though so if you have a recommendation for a certain one, let me know. Vera does sleep all night once she's asleep. But she is waking up with a bird's nest on the back of her head again. It hasn't looked this bad since we had her in Ukraine. :( We do rock her before bed each night, but she's obviously still swaying more than normal once we lay her down. We're definitely going to do a bean box/table for Vera to play in. Much less messy than sand and we can do that inside. I have reserved The Out of Sync Child and several other sensory related books at the library. We're looking at swings too...one for outside and one for inside. And from what so many of you shared, I'll be showing the videos to the OT as well as the neurologist. Unfortunately our appointment with the OT is not until next month.

So, a little more to this puzzle. Vera used to primarily do her 'thing' at bedtime. She may have done it once or twice during the day, but only for a few minutes each time. Last week she started doing it anytime we did not have her engaged. She would only play with playdough if someone was actively engaged with her at the same time. I can't put her at the kitchen table with playdough and try to do some school with the older 3 (with all of us at the table together). She wants somebody's undivided attention at all times. She wouldn't color unless someone was coloring with her. She wouldn't play with anything unless someone was playing with her. If no one was actively engaged WITH her (not just next to her), she would lay down and do her thing. This just started the week before last. On Saturday I kept her busy almost all day. We played in the water table outside. We came in and had lunch and then got the playdough out. We read books, we colored, Vera had a long bath and we did a few other activities. I finally left Vera to make dinner and no one else was playing with her. She immediately laid down and started her thing. Sigh.

Vera will do her thing with or without music. She definitely prefers to do it with music, but if I'm doing school with the other kids and she can't play her music, she'll just lay down and start. I'm trying to figure out why, all of the sudden, she is doing her thing so frequently and for so long each time. I should also tell you that if we have a really busy day or we're gone most of the day and Vera doesn't have a chance to do her thing, she will most likely have a tantrum. And she'll definitely have a hard time falling asleep that night. I mentioned in my last post that her episodes are getting more 'violent'. I don't mean that she's angry or aggressive when she does this. Maybe 'intense' is a better word. She used to be much calmer during her episodes.

I don't believe that food or bathroom issues are a trigger. She'll stop herself and use the bathroom and then go right back to it. She'll stop and have a snack or a meal and go right back to it. We have not had any big issues with food or bathroom happenings since being home.

Several of you told me that your child(ren) had setbacks right around the 2 month anniversary of being home. Our 2 month anniversary is tomorrow. That could be a trigger. But why, I wonder? What's so special about 2 months?

Starting school could be another clue. We homeschool and now the big kids and I are not available every waking second to play with Vera. It's been a hard adjustment for her. That could be part of the increase too.

The weekend before we started school, Vera got her glasses and started patching. That could be another trigger. She's seeing the world in a new way and it could be hard and overwhelming to process. (Thank you to who shared that thought with me...I hadn't even considered it.)

Vera also mentioned her favorite nanny and Ukraine a few times last week and lots over the weekend. It could be that she's feeling more comfortable and settled in her new life with us and the grieving is beginning. Along those lines, we aren't having many control issues these days. Could that be part of it too? Maybe she's realizing it's okay to let Mommy and Daddy be in charge. And maybe that's a little scary. OR maybe this is her new control thing.

I was thinking that the jerking her arms and legs do during an episode was involuntary, but I really don't know anymore. The other day Vera started her thing and Jon laid down on the floor next to her. He asked her what she was doing and she made the motions and demonstrated it. She also pushed him away. But she obviously knows what she's doing. Some of you suggested it's some sort of dance that Vera is doing...could very well be. But she'll sometimes jerk her arms and legs in the very same way while sitting up...at the dinner table, in the van, on the toilet, etc. I was thinking it was involuntary because when she jerks on the toilet or at the dinner table she yells and panics like she's going to fall off the seat. It seems like it takes her by surprise. That makes me think she didn't mean to do it. But I could be wrong. Or, maybe when she's sitting up it is involuntary, but when she's laying down she enjoys being able to control it.

Some of you mentioned that your child did/does something similar to what Vera does and it's almost like a 'high.' Yes. Exactly. Vera definitely gets pleasure from doing this. She does get a 'high', 'buzzed' look on her face while she's doing her thing. Saturday afternoon when I left her to make dinner and she started, about 5 minutes into it, she let out a huge laugh...a deep down belly laugh. I don't know what was so funny, but she was obviously enjoying herself. I guess that scares me a bit. I don't want her to become addicted to this behavior or become obsessed with it. And right now that is how it seems. Just because she enjoys it and it brings her pleasure, doesn't necessarily mean it's good for her. But, maybe it is.

Needless to say, I am not freaking out like I was last week. I appreciate SO MUCH all of your comments, messages, prayers and encouragement. I think you've all pointed me in the right direction and I am much more at peace. There are still many questions and many more unknowns, but like so many of you said, it's only been 2 months. Goodness, she has come so far in two months. I will focus on the good!

AND, dare I say it, we have reached the milestone I've been waiting to reach. ONE WHOLE WEEK without a tantrum!! She still had a few little fits and time-outs, but NO TANTRUMS!! Can I get an amen, please?!