6 Months Home - A Progress Report

Today is quite an anniversary! We've been home with Vera for 6 months. Unbelievable, isn't it? Half a year. It's also Christmas Day in Ukraine.

It's been a rough week here. One of those weeks where I wonder how long this will last.

The stimming.

The defiance.

The tantrums.

This update is more for me than it is for you. I need to see some progress. So, I've been keeping notes and trying to remember how life was 6 months ago when we first came home and how it is now. I've been encouraged as the list has grown. This list is in no particular order...just as I thought of them...

Vera rarely does her jerking thing in the car anymore and never does it on the toilet or at the dinner table.

She has gotten over her fascination with paper products. In the beginning, we had to watch her closely with TP, Kleenex, paper towels, etc. She would tear up a roll of TP, square by square, and throw it away. She would remove Kleenex tissues from the box one by one and put them in the trash. Same with paper towels. She hasn't done this since I removed all the TP from the trash can and made her use it until it was gone. She did NOT like using anything that had been in the trash can, even though it was still perfectly clean. It took care of the problem, though.

When Vera had her occupational therapy evaluation at the beginning of October, she couldn't connect two dots with a straight line. She couldn't write a 't'. My nephew's first birthday was last month and I had Vera sign his card. I wrote the letters on a piece of paper and she copied what I wrote. The little thing that looks like an ice cream cone is her "R". She did pretty good, didn't she?

Vera also could not stack more than 4 blocks in October. Look at what she can do now.

She couldn't string beads in October. Now making bead jewelry is a regular activity for Vera.

Vera can play Candy Land and Chutes & Ladders, though we still have to help her through it. She sometimes likes to play by her own rules and gets upset if we ask her to play correctly.

She just about has all the colors down.

She can count to 4. I admit that I'm frustrated she can't count to 10 yet. I count to 10 out loud every day while we stretch. I probably do it 30 times a day, at least. I'm sure she'll get there, but I figured she would've had counting to 10 down by now.

Vera's English is coming along, though most people need help with translation. She talks like a toddler, but she's getting there. Her vocabulary has grown exponentially. She used to end any word ending in 'ing' with 'et' instead. "Mommy, what you maket dinner tonight?" Jon and I would joke about who got to 'rocket' Vera at bedtime. We're working on the 'h' sound right now. She gets it mixed up with 'g'. Help is gelp. Home is gome. Hurt is gurt. We're also working on the 'k' sound. Cold is hold. We're working on the 'th' sound, too. That one is really hard for her. I wonder if it's a CP thing because it's almost like her tongue can't do it.

I mentioned in my last post that Mine does not come up very often anymore. Hurray!

Vera does not scream and fight me during stretching any more. She used to scream, quite loudly, during this daily routine. She would yell, "Ouchie! Ouchie!" and you would've thought I was torturing her. She would yell 'Ouchie' before I even touched her. If any adults were here (like Jon home on weekends) she would yell for them. "Daddy! Ouchie! Daddy!" Or she would yell for me if Jon was stretching her. She would yell for Jon's mom or dad when they came to visit. It was really awful and I'm so glad we're past this phase.

Vera does still have tantrums, but I must say that they're not nearly as often and definitely not as long. She doesn't (usually) scream for hours in a day anymore, though we do still have an occasional bad day (yesterday was one of those). I hope that someday I forget our worst day. When I started keeping track, she had screamed for at least 4 hours over the course of the day. I think it was more like 6 though. The big kids and I were very weary at the end of that day.

Vera has not had a rage since the week of Thanksgiving. We went to Illinois for the week and Vera suffered big time regression. I don't think it was too soon. I think Vera would've reacted the same way no matter how long we waited for our first trip away from home. But, she couldn't handle the change in routine. She had a HUGE rage...huge...she was like a wild animal. I was sore for days from restraining her from hurting herself and me. It was a long, tiring, stressful week, but we sure did enjoy visiting Jon's family. All that to say, the rages are few and far between these days. Hallelujah!

Vera with a few of her cousins!

She used to FREAK OUT if she couldn't find something. Usually whatever she was looking for was stuck in her shirt or she was sitting on it. Sometimes it would be right in front of her or next to her and she just couldn't see it. She would cry and scream if she couldn't find something. She doesn't do that anymore. We're so thankful for this progress because she loses things at least 12 times a day. She lost a headband at the grocery store a few weeks ago, after we all advised her to leave it the van so she wouldn't lose it. I was so impressed with how well she handled it. She asked if we could go walk through the whole store to find it and didn't even cry when I said, "No." Our girl is growing up. Of course, I write this out and then yesterday Vera lost a marker. She SCREAMED for at least an hour..."Marker! Marker! I want my marker! Where's my marker?!" I finally put her in bed and made her stay there until she was calm. At some point during the screaming, I said, "Vera! It's a MARKER! Is it really worth all this?" Apparently it was. At the end of the day, Vera found the marker...right where she had left it. Go ahead and chuckle. I am.

Vera will now ask for things and say 'please' instead of saying, "Give me". Most of the time.

She will now watch videos. When we first came home she wanted nothing to do with television. I know that's a good thing, but it's also nice to be able to put on a video while I take a shower or make dinner and know that she'll sit there and not get into trouble.

6 months ago Vera did not know how to give hugs or kisses. It took time and daily teaching, but she now gives the best hugs. And she says "I love you" all day long. "I luh you, Mommy. You GOOD mommy." She must say it 20 times a day. She says it even more after a tantrum. Sometimes I wonder if she has tantrums on purpose just to see if I'm still going to love her afterwards. The things she has tantrums over are strange. Last weekend I told Vera to go get dressed and you would've thought the world was coming to an end. As Vera thumped down the hallway to her room, screaming the whole way, Jon and I looked at each other and said, "Where did THAT come from?! Really? All that about getting dressed?" Jon and I believe that most of the time, if not all, she controls the tantrums. By that I mean that when it would seem to others like she's out of control with her screaming and crying, we just have to say the right thing and she stops. There's no slowing down like when a toddler is calming down from a fit. Vera's prized possession is still her watch. When she's in the middle of a long tantrum, if I tell her to stop screaming at Mommy, she will turn to my nearest ear and scream with all her might. But if I say "If you continue to scream at Mommy, you will lose your watch," she will always stop INSTANTLY. No slowing down or taking deep breaths. It's like she can flip a switch. I really don't like to threaten like that, but it's the only thing that makes her stop screaming. Some of you may disagree with this tactic, but we tell Vera that if she's going to act like a baby we're going to treat her like one and babies don't wear watches.

I can now take a shower and not have to worry what Vera is doing to the pets and others.

Going to regular places does not overwhelm Vera anymore. We can now go to church AND out to lunch with friends and we (usually) don't pay for it when we get home. I can take her grocery shopping and not worry about tantrums and stimming. We can have dinner with friends in their homes and we don't leave with a kicking, screaming Vera anymore. That's been a welcomed change.

Vera can now sit through church and Jon and I can sort of pay attention. Most Sundays. We do still sit in the very back close to a door since we still occasionally have to remove her because she chooses to misbehave. And I do mean she chooses it. The little smirk on her face tells us she knows exactly what she's doing. I just wish I knew why she enjoys making these little scenes. I know it's one of those control issues, but it never ends well for her.

Vera seems to be moving through the 'why' stage and is almost finished, I hope. I thought it was going to kill us all. She didn't just ask 'why' about normal things. If we said we liked something, she asked 'why?' (She still does this occasionally.) If I told her it was time for breakfast or time for bed, 'why?' If I said I was hungry, 'why?' She would ask things like, "Is this baftub?" "Yes." "Why?" She did that about everything from clothes to food to...everything in the house. "Why Mommy take shower?" "Why Mommy make dinner?" "Why Mommy wash dishes?" At the grocery store, she would ask 'why' about everything I put in the cart. "Why Mommy buy dis? Why Mommy buy dat?" She would literally ask 'why' from the time she got up til the time she went to bed. Oy! At PT, whenever the therapist would tell Vera to do something, she would ask 'why?' We had several talks about it and I told Vera that at PT, Miss Anitra is in charge and you don't ask 'why'. You just do it. We nipped that in the bud. Sweet, patient Anitra would take time to answer all of Vera's whys and more time was being spent in conversation than PT. I wasn't wasting my time or money on conversation!

And speaking of PT, Vera is doing such a great job! I wish we could afford to go more than once a week...it's been so good for Vera. We love her therapist, Miss Anitra. She is awesome! Just the right amount of firmness and fun. I'm still not sure what we're going to do when Vera's 20 visits covered by insurance are up for the year. I hate to give up Miss Anitra, though. We'd like to get a few more things so we can do more work at home...a Bosu ball for one. If any of you have one collecting dust or taking up needed space, I'd love to take it off your hands for you. And I need to get some sort of step stool for Vera so she can get in the van by herself. We want Vera to be as physically independent as possible. Plus, she's only going to keep growing and I'm not going to be able to lift her into the van forever. She could probably climb in, but it would be a slow, frustrating process. Plus we can't have the princess getting dirty, can we? Someone suggested an aerobic stool since they're wider and are more stable than a regular step stool. We also want to get Vera a tricycle, but they get a bit pricey when you need one big enough for a large 6 year old. And I'm betting it would need to be adapted a bit for her.

Vera rode this tricycle all the way down this very long hallway.

I was amazed that she could do it!

She loves the days that she gets to ride the tricycle at PT!

Something like this in pink would be perfect for her, don't you think?

We don't have the 'safe' conversation every day anymore, though it did come up for awhile when she lost her first tooth. The tooth fairy came. We learned the hard way that this was not a good idea. If the tooth fairy can get in and take her tooth, what's to stop the tooth fairy from taking Vera? What's to stop anyone else from getting in the house if the tooth fairy can get in? How can Vera be safe if the tooth fairy can just come in and take her teeth? So, no more tooth fairy. We really should've known better, but we hadn't had the 'safe' conversation in quite awhile. We just weren't thinking. If people come for a visit and spend the night, one of the first things Vera wants to know is if they will keep her safe. Will they hit and kick and bite anyone who tries to take her? It was one of the first things she asked my mom when she came to visit. We're getting ready for company this week and I'm very curious to see if Vera asks this question of them.

Vera LOVES co-op and was quite unhappy when I told her we took a break between Thanksgiving and the New Year. She asked me almost every day how many more days until we went to co-op. By the end of our first semester, her teachers could understand some of what she said. They were quite impressed with how far Vera had come since the beginning of the semester. I put her in the kindergarten class and it was a good fit for her. She is still way, way, WAY behind her peers in every way, but co-op has been good for her. Vera is looking forward to beginning her 2nd semester on Tuesday. A few weeks ago, one of the boys in Vera's Sunday School class made the comment that 'every 6 year old can write their name.' I confess that it stung a little and I wished I could plug Vera's ears that very second. He was sitting next to Vera and by the look on her face, she heard him. She understood. She knows that almost every kid in her co-op class and Sunday School class can write their names. She knows that she can't. Yet.

Notice anything odd about this photo?

No? That's because there isn't anything odd to see! Not anymore, anyway. Vera is using her RIGHT HAND to control the mouse. This is huge, people. HUGE! Vera used to use her stronger, left hand...awkward, isn't it?
We got Vera her very own computer game for Christmas and by day two of playing it, she was using her right hand for the mouse. We were very excited with this development. One of our goals has been to draw that right arm out from her body and using the mouse is doing just that. She loves her new game and thanks me for it every day that she gets to play it.

Remember when I shared the videos and begged for help with Vera's 'episodes'? Let me update about that as well. I've been meaning to for awhile. The long and short of it is that this has improved. I need to remind myself of that because it's definitely not over. Nor do I see an end in sight. Several of Vera's doctors have told us to interrupt Vera when she stims and not to let her do it. There are several reasons for this, but that's for another post. Vera does not try to stim at all times of the day anymore like she was doing when I wrote that post. Now it's only at bedtime and first thing in the morning. Occasionally she will start if music is playing. Sometimes she tries while we sing at church. Music is definitely a trigger, as is lying down. If she's ever playing on the floor and ends up lying down, she will try to stim. So we don't let her lay down during the day. At bedtime I remove anything that makes music from her room because when she wakes up she'll get those toys and stim to the music. We've been rocking her to sleep in an effort to break the bedtime stimming habit. She was waking up with normal hair. Until recently. We discovered that she's been faking falling asleep and would stim when we laid her down and left her room. She is quite a good, little faker. She still sucks her fingers at bedtime and she would relax, her fingers would fall out of her mouth, her arm would fall to her side. Anyone would believe she's asleep. But Jon and I were on to her since her morning hair is our gauge. We began lying her down and pretending to leave her room. As soon as she thought we had left and shut the door, she would start her rocking. It was immediate. And SO frustrating! Now that we're on to her, we stay in her room long after lying her down until we're positive that she's asleep. We noticed that Vera recently started brushing her own hair in the mornings and realized she was trying to hide her stimming. Yep, she's a smart one. She also figured out how I knew when she stimmed in the mornings. I could always hear her feet kicking the floor. Her solution? She now stays in bed and stims so I don't hear the thumping. So then I was listening on the baby monitor for her odd breathing. We just put in a video monitor so we can watch and not guess about what Vera is doing at bedtime and first thing in the morning. It had gotten to the point that I was hardly sleeping because I was always listening for Vera's stimming breathing. This momma needed a good night's rest, let me tell ya! We've had the video monitor for two days now and it is my new best friend. I wish we had bought it months ago!

All in all, we really have come a LONG way over the past 6 months. People keep reminding me that we have 6 YEARS of institutionalization to overcome. The past 6 months, well 7 really, have probably been the hardest, most stressful months of my entire life. I can't even imagine how hard and stressful they've been for Vera. While Vera was thrown into it with people she barely knew, with a language she couldn't speak, in a culture quite different from her own, I had/have an awesome circle of support. I wish I could put into words just how thankful I am for the love, meals, encouragement, help and prayers that we've received. As much I'd like it to be, it's not going to be a short, easy road. But nothing worth doing is ever easy, right? I know I couldn't do this without God, Jon, my big kids and all of you who have lavished so much love and care upon us.

Happy 6 Month Anniversary Home, Vera!