A Big Day - and Marietta was There!

Ha! You thought I was kidding, didn't you, Marietta?!

Look at this picture.

See anything significant?

I do.

We couldn't have taken this picture a week ago.

Why?

Because a week ago Vera would have PANICKED on uneven ground.

She would've yelled and grabbed my hand for dear life.

Walk on grass alone?

And not just grass...hilly grass.

Forget it.

A week ago she would've dropped to her knees and crawled.

A week ago she certainly would not have let go of my hand to go chase a ball.

Today at our homeschool game day...

she did just that!

(She's on the far left...just in case you didn't realize that's Vera.)

She was WALKING all over that uneven grass!

Do you know where I was?

See the red awning in the above photo?

Yeah.

That's where I was.

Telling Dana and Marietta how amazing it was that Vera was OUT THERE

Alone

Not holding anyone's hand

Not panicking,

On her FEET

Chasing a ball

With all the other kids.

We all got teary eyed watching Vera play.

Somebody (I shall not mention names) was very excited to

see one of my blog posts happen LIVE and in person!

Vera played HARD today.

After chasing the ball in the grass, the big girls helped Vera climb on the playground.

You can see Abbi on the left (above) running to get to the top to help pull Vera up...

Vera got a little stuck at this point.

But such sweet victory awaited her at the top!

Vera LOVED playing with the big girls today!

Vera played hard for several hours.

She was all over the place!

She was exhausted when we finally loaded up the van to head home.

Marietta, I didn't tell you about the other significant

happening that you witnessed today.

You saw what happened, but you probably didn't see the significance.

Some of the kids were getting ready to play another round of hide & seek.

Vera was accidentally nudged as the group began to scatter and hide.

It was a nudge that you and I would probably not notice.

But it was a nudge that caused Vera to lose her balance.
It was one of those mommy moments that you see happening

but there's nothing you can do to stop it.

She fell. She fell hard.

The fall included her slamming the

back of her head on the concrete parking lot.

Her glasses flew off and everything.

It was a hard fall.

And Vera cried.

She sought comfort from me.

I was right there and immediately dropped down to the ground next to her.

She let me pull her into my lap and rock her and kiss her and wipe away her tears.

That wouldn't have happened just a few weeks ago.

A short time ago Vera would have seen me coming

and put up her hand to wave me away.

She would've said, "No, no, no!"

But not today.

Today she let me mommy her.

A big day, indeed.

Vera had her evaluation for occupational therapy this week.

She can't cut a straight line.

She can't draw a straight line from one point to another 2 inches long.

She can't draw a closed circle.

She can't draw two perpendicular lines (like a cross).

She can't string beads.

She can't stack more than 5 blocks.

She can't do many things that a 6 year old should be able to do.

I know it must sound like I'm focusing on what Vera can't do.

I'm not.

I'm focusing on what Vera WILL DO!

I'm putting it here because someday very soon

I'm going to read this post and say

"Oh yeah! I remember when Vera couldn't do those things.

Look at her now!"

Just like I did today.

How Long?

I have some very cool news to share, but I'm waiting on a few more details. I also need to tell you about Vera's awesome AFO's, EEG & MRI results, stimming and other updates.

In the meantime...

We just concluded a very long, bad week with Vera. Very long. Very bad. Bad. Bad. Bad.

Vera started physical therapy last Friday, and it was awesome! I am so excited that we have finally gotten to this point. PT is going to be GREAT for Vera! But, it is also going to wear her out. She was a noodle by the time the PT finished with her last week. A tired, 40 pound noodle. A couple of friends of ours had already told us not to plan anything else on the days Vera has PT because she will be tired. They were so right. We got home and Vera had a tantrum almost instantly. She was just plain mad that I made her walk up the stairs. And she let me know she was mad. And I still made her walk up the stairs.

Abbi went to a sleep over last Friday. She's been to several the past few weeks. Vera had been screaming since arriving home from PT, so during one quiet moment I hugged Abbi and told her, 'Just in case Vera is screaming when your ride comes. Have a great time. I love you.' Vera quit screaming a few minutes before Abbi left. My friend who picked Abbi up noticed Vera's tear streaked face and asked if she was upset. Upset was putting it mildly.

Jon's parents came for a visit last weekend. His dad has been here several times since we've been home with Vera, but we hadn't seen Jon's mom since we first got home. We had been telling Vera for a few days that Grandma and Grandpa were coming soon for a visit. We were all very excited.

Jon and I battled with Vera all weekend. I don't even remember the last time we had such a bad string of days like that. Everything was a fight. With few exceptions, Vera was defiant and disobedient every waking moment. It was exhausting, both physically and mentally. I think Vera spent more time IN time out than out of it last weekend. The rages even returned. Fun. Jon's parents got to see the absolute worst side of Vera. It was so bad that Jon brought these home for me on Monday. Yep. It was that bad. I was so discouraged that we had returned here.

A wonderful friend has been bringing us dinner every Thursday the past few weeks. Yesterday she asked me how everything was going. I told her about our horrible, no good, very bad weekend and she helped me brainstorm a few possible triggers. I had been thinking all week that it had to something with Jon's mom being here. Like I said, Jon's dad has been here several times and spent the night and Vera was fine. Why was she such a stinker when Rita was here? The conclusion I came to was that maybe having two women here stressed Vera out. I'm sure to Vera it was similar to the orphanage having multiple women around. We've had many women come and go since we've been home, mostly to bring meals, but none of them have stayed long or spent the night. And even though Jon's mom didn't do any caring for Vera, maybe just the presence of another woman was too much for Vera.

My friend had another suggestion...maybe Vera was scared that with another woman here, I was going to leave. Or maybe she was scared that Roger and Rita were going to take her away.

Bingo!

Fear.

This week I got out Beyond Consequences, Logic and Control and did some reading. It reminded me that everything Vera did last weekend was likely a response to fear. But what in the world would she have to fear? Doesn't she know by now that she's safe here? I mean, it's been a whole 2 1/2 months...how long is it going to take?

I know. You're probably all saying, "DUH, Amy!" Some things are so obvious to people on the outside looking in. When you're in the trenches all day, every day it's not always possible to come up for air and catch your breath. I am so thankful for friends I can spill all the ugly details to without fear of judgment. I think my friend hit the nail on the head.

From

Beyond Consequences, Logic and Control:

A Love Based Approach to Helping Children with Severe Behaviors -

"A defiant child is essentially a scared child. For children with trauma histories, it can be any request from the parent that creates a feeling of threat. A parental request at any level (yes, simply being asked to take out the trash or simply to put on his shoes) can be one that shifts the child into a fear state due to perceiving the directive as a threat. Dependent on the history, the child may be actually terrified. In that moment, the child cannot determine whether the parent's request is safe or not. He immediately goes into freeze mode, and then becomes defiant to the parent's request. In that moment, the child has to be defiant. There is no other alternative. The essence of defiance is fear. This is a traumatic stress issue. It is not an issue of the child working to control or manipulate the parent. It is not an issue of the child testing the limits or baiting the parent to see how he can make his parent become emotionally reactive. Defiance is a fundamental issue of feeling threatened and overwhelmed with fear."

Vera and I have had the same conversation multiple times a day this week. It goes like this:

"Mommy stop? Vera no take?" (Translation, Mommy will stop people who try to take Vera?)

"Yes, Mommy will stop anyone who tries to take Vera. No one will take Vera away."

"And Daddy stop? No take Vera?"

"Yes, Daddy will stop anyone who tries to take Vera."

"And Toby bite?"

"Yes, Toby will bite anyone who tries to take Vera."

"Vera stay Mommy."
"Yes, Vera stays with Mommy."

"And Daddy."

"Yes, Vera stays with Mommy and Daddy."

"And Jacob and Caleb and Abbi."

"Yes, we all stay together. We're family."

"And Toby and Phoebe."

"Yes, the dog and cat too. We all stay together. We're a family."

Every day.

At least 3 times. Usually more.

We have had this conversation.

All week long.

So...do you think she was scared last weekend?

Do you think maybe she thought someone was going to take her away?

Bless her little heart.

Slowly but surely Vera has gotten back to herself this week. Yesterday was the BEST day Vera has had in awhile. She was in my lap most of the afternoon which is unusual for her. She's a busy girl and doesn't like to sit much. We read lots of books. We watched a short video. We had tea and granola bars. And we had this conversation.

"Vera Mommy's?"
"Yes, Vera is Mommy's."
"And Mommy Vera's?"
"Yes and Mommy is Vera's."

"And Jacob and Caleb and Abbi?"

"Yes, Mommy is Jacob's and Caleb's and Abbi's and Vera's."

"Mommy nice. Kiss my cheek?"

And I kissed her cheek.

"Fank uh, Mommy. Vera kiss Mommy."

And she kissed me.

And then we had the first conversation again.

Twice.

Fear.

How long will Vera live with fear?

How long will she wonder if someone is going to take her away the way we took her away from the only life she's ever known?

How long will she be scared that I'm going to leave her at every doctor visit?

How long until she knows she belongs here and is here to stay?

How long?

I just have to add this in...as I'm getting ready to hit Publish Post, Vera brings me a piece of paper with a picture that she drew of an airplane. She has also written a note on it. With a big smile she tells me that it says, "I love you so much. Big hug."

How long until she knows I love HER so much?

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?!