Anya Update

My friend Sharon said I needed an Anya update with lots of pictures.  This one is for you Sharon :).

Oh Anya, Anya, Anya.  How do you begin to explain such a child?!  I recently looked back on my blog to the day we met her and found this quote from the social worker of the orphanage "You have kind of a naughty one.  She runs and she probably won't listen to you."  That's pretty much the most accurate description of her!  They warned me that there was stubbornness on that extra chromosome but I had no idea that I would get the queen of stubborn!

If she can't touch it...she does.

If she can't open it....she does.

If she can't put it in her mouth....she does.

She knows she can't kick people....so she does.

 

I could make that list a mile long but I think you get the point.  She is a runner too.  We lost her on the playground once.  I literally took my eyes off of her for a quarter of a second and she was GONE.  Insert insane mother running through the park like a lunatic.  We found her...in a tunnel on a playground on the other side of some shrubbery.  I don't even give her a quarter of a second anymore. 

Pouting

 

So what I've just described is only a small part of the reason that Anya is nicknamed "the rascally one".  You have to be "on" at all times around this child. 

 

That is half of who Anya is.  Let me tell you about the other half.  She is the most loveable, precious, funny, sweet girl I've ever met.  I adore her.  It took us a good solid year to get past the constant behaviors and annoying habits and be able to really fall in love with her.....and fall in love we have.  Oh  how we love this kid.  She still drives us insane, don't get me wrong, but she's ours.  In the deepest sense of the word, she is ours, and every member of our family appreciates both sides of who she is because she is one spunky chick!

 

 

She is thriving in school.  She is picking things up like crazy.  She knows her alphabet inside and out.  She is counting.  She is starting to learn letter sounds and the next step will be early reading.  Amazing.  She is so loved by her teacher and her amazing para.  They also know the other side of her.  ;)  She has given them a run for their money!  My favorite story to illustrate Miss Anya at school is the time that she took her hummus, spread it up her arms, and then hid under the table so they couldn't reach her! 

 

Her verbal skills are exploding and her sign vocabulary is getting beyond me!  She loves to sing and if it were up to her she would have music on 24/7.  When her favorite songs come on the radio she screams with joy.  We learned quickly that Anya loves to touch things and make them make noise or music.  Because of that she became obsessed with electronics.  At Christmas time we wanted to really eliminate the constant obsession with the ipad, iphones, etc., but still meet that need.  I found these Leap Frog items and she loves them!  She can touch her little heart out and it sings songs and makes noises.  It also teaches her to count!

 

Anya still adores Elmo.  She now has 4 of them.  She usually has 2 every single place she goes.  They go in the car, in grocery carts, they sit on the table while we eat, and then they rest on her bookshelf when she goes to bed.  It's not uncommon for those Elmos to be accompanied by a variety of toys as well.  There are times she's trying to get to the car and her arms are so full she can hardly walk!  This morning she gathered all 4 Elmos plus a book and a play phone to have breakfast.  This can only happen when the whole family isn't there at the same time! 

 







Anya is so polite.  She says thank you every time you give her something and even when she gives you something!  I think I'm going to teach her to say "It's my pleasure" and see if I can get her a job at Chick Fil A when she turns 16!

 

She still loves all things Signing Time.  There are few other things she will watch.  She is also in a naked phase.  When she is home she is rarely seen with more than a diaper on.  She is great about keeping her clothes on everywhere else.  She understands she needs them outside of the house but the second she walks in the door the clothes start coming off! 

Getting ready to play in the snow!

 

I finally beat her in the "take my shoes off EVERY SINGLE TIME I GET IN THE CAR" game.  It was driving me insane.  She would take off her shoes and socks and throw them.  Whenever we got somewhere I had to dig through the car for them.  If I was lucky I found all 4 pieces, if I was unlucky I was already running behind and now needed to add the time to get her put back together.  In the summer when it's just sandals and it's warm it's not a big deal.  Winter is another story.  I solved that problem with a pair of pink high top Converse tennis shoes!  That took care of that!

 

Some day she might actually potty train.  I haven't been pushing it.  I'm going to really go at it this summer when I have her for an extended period of time.  The way I see it at this point, the longer we wait the closer she will be to being ready.  Potty training the queen of stubborn is not exactly high on my list of desired activities!!

 

Anya still grinds her teeth quite a bit.  She loves to chew on toothbrushes and we have a variety of other chew toys to keep her mouth occupied but it rarely stops the grinding.  I'm to the point where I tune it out.  When I can't tune it out it is like nails on a chalkboard!

In my suitcase with her Elmos, Leap Frog toys, and a toothbrush in her mouth.  This is pretty much  how you can find her most times!

OK here are a few more pictures and then some videos of her.  I assure you she will likely be in a diaper in both of the videos!

She lost her second front tooth this week!

The girls were in 2 calendars this year!  This one is from the hospital where they get their private therapy.

Action shots in therapy.

This calendar is for Landon's Helping Paws which is an organization my friend founded to help fund service dogs for kids with special needs.

 This is Anya singing Twinkle Twinkle Little Star

We were watching Cake Boss and they were making a Sesame Street Cake.  This was Anya's response when she saw Elmo on TV :)


 

 

School Decision

I have some surprising but very good news from today's IEP meeting to determine a school placement for Oksana.  Let me back up a few steps.  You know that we had an IEP meeting before Christmas to discuss moving Oksana to a new school with a program designed for kids with more significant behaviors.  The plan was to have representatives from each of those programs come see Oksana and then for Larry and I to observe them.  Then we were to come together again and make a decision.  Although the snow days impacted our ability to visit the other schools, they were able to come out and meet Oksana, so we did still meet today. 

After that first meeting we had a week or 2 before Christmas and in that time we really started to be surprised by the number of good days Oksana was having.  Her new mood stabilizer was significantly decreasing her outward aggression and her teacher was learning more about trauma and trying some new things to help Oksana.  The combination of the two really seemed to be making a difference and at one point, right before Christmas, I remember talking to her teacher and saying, "Do you think they will keep her here?"  Of course she didn't know, but it was interesting that we were seeing changes.

After break we saw more of the same.  Oksana's teacher noticed an area where she was seeing an increase in behavior and it was surrounding rewards.  Her paras, who really love her, were giving her little trinkets and "rewards" throughout the day.  Oksana would often come home with little bracelets, hair ties, etc.  Well the teacher noticed that Oksana was using that to  manipulate and control. For example, they would go to get a drink and Oksana would refuse to go bacl into the classroom.  She would try to negotiate a reward to go back in.  Once her teacher asked her to do something and she said "What are you going to give me?"  As soon as that clicked the teacher put firm boundaries on her rewards.  She then held a meeting with her entire staff and told them that they must follow the same exact boundaries down to the same wording if they are with Oksana.  Black and white is the only option at this point because Oksana uses grey to manipulate.  They have seen immediate results from that decision.....and that leads us to today.

It was decided that at this point it would cause more trauma than benefit to move Oksana and she will be staying in her current school.  We all know Oksana is not cured.  We all know that the time will come again when she will lose control....growth spurts, developmental milestones, hormones, etc. can all cause significant challenges in kiddos like her.  It was agreed that Larry and I should still go tour the other schools and be proactive in our decision instead of rushing to make a decision when it is an emergency.  We will have a good idea of what each of the programs offers and we will be ready when Oksana will benefit more from another school. 

I love good news..... :)

What's a family to do?

I have found that one of the biggest challenges of parenting a child with the variety of diagnoses that Oksana has is making sure the rest of our family is OK.  Much focus is put on Oksana and getting her well physically and emotionally.  As we sunk deeper and deeper into her issues this summer a wise friend, and therapist, told me that we can not sacrifice the mental health of the rest of our family for hers.  I could see that was exactly what was happening so it became obvious that some changes had to happen for our family to stay strong. 

-Respite - The truth is I've known for a long time that we needed respite but I was so reluctant to find it.  Honestly, leaving my kids with anyone is hard for me much less leaving them for a weekend with a bunch of strangers.  Regardless, when I told my boys that we were given the opportunity to send Oksana to a weekend respite program one weekend every other month I was shocked by the joy in one of my boys in particular.  It really showed me how desperately we needed this.  Larry and I filled out pages and pages of paperwork and then toured the respite facility.  We were incredibly impressed.  Only 5 kids can be there at a time, they all have a 1 on 1, they all have their own bedrooms, they go on field trips, help cook meals, the facility has a sensory room, an art room, a multipurpose room, and a great playground.  I knew she would love it!  Oksana went to her first respite weekend back on November.  We dropped her off on Friday evening and picked her up Sunday around dinner time.  She had a blast and we had a great weekend.  She goes for her second weekend on Friday. The best part of this is that they can handle her.  I specifically told them that if they are going to call me to come get her when she gets aggressive then it is not respite for me and we can forget it.  They asked me to describe her behaviors and then the described to me what they deal with and told me they don't call parents unless the children are in danger.  Yeah, she will be fine.

Now we need to find in home respite.  This is what I was discussing a couple of posts ago.  We need to find qualified caregivers to watch Oksana (and Anya, not because she is as challenging but because we just need someone to watch her sometimes) other times of the month when we need childcare.  We are still in that process and have a husband and wife couple who were highly recommended by a friend coming to meet us on Wednesday.  It's not easy at all. 

- Community programs - There are a couple of things that we are doing for ourselves to stay emotionally healthy as well.  In February I will be starting a class with NAMI (National Alliance on Mental Illness) designed for parents of children with mental illness.  I really hope this will help me understand her better, but more than that I hope to meet some families in the same shoes.  Also, our boys are starting a program called SibChat at our church that meets once a month.  It is for kids 11-17 who have adopted siblings.  They will have dinner together and then 2 licensed therapists will guide them through activities and games, giving them a safe place to say what they enjoy and find challenging about living with adopted siblings. 

- Support - The other thing we are doing is surrounding ourselves with people who we can be real with, and being willing to be open and honest about our struggles.  This summer we told almost no one the depth of what was happening in our house.  We are still very careful about some of those details but we realized we were suffering alone and needed to open up to start to heal and get support. 

- Summer - Half way through the 21 days of Christmas break with Oksana our Regional Center worker called.  She just had a quick question for me but since I had her I told her that we needed help finding summer programs for Oksana.  Oksana goes downhill fast when she is stuck with little to no routine or activity.  There is no way on earth that we are going to do a repeat of last summer.  It's not happening.  Luckily she knows all too well what we are dealing with and said she will find us help.  I asked her if there were going to be camps and such that could handle Oksana.  She said if there aren't we will hire a respite worker to go with her.  That is a huge relief to us.

With these things in place I truly believe that our family can stay healthy and really be able to enjoy Oksana.  She's an incredibly awesome kid but she is also incredibly challenging.  With help we can cope with the challenging aspects better and fully enjoy her through the good times!

A quick side note.  Because of all of the snow days our meeting to determine Oksana's school placement has been delayed.  There just isn't enough time now to do all of the observations that need to be done by Wednesday.  I should know more soon.  I'm just incredibly anxious to get this done!

Sensory Room

This sensory room is the best idea we ever had.  With 2 girls who don't play with toys, this room has been used far more than any other Christmas gift would have.  Here is the final result:


This is not a "room" with a door.  It is just a section of our basement.  To block off the entryway we got a huge, black, room darkening, curtain.  When we want it dark in there we just pull that over the entrance and we are all set!  Here you can see our trampoline, lycra tube, and swings.

Here is our "Pea Pod".  If you aren't familiar with this it is a big inflatable thing that you sit in and it provides deep pressure.  Oksana loves it!  One of our swings didn't work out like we'd hoped and a friend had this and never used it so we traded!  We also have shelves that hold our music (we use lullabies, relaxation music, and hymns), and smaller sensory items.

Here is the crash pad and the therapy balls.

We have 2 types of lighting.  The first is Christmas lights on the ceiling.  There is one white and one multicolored strand.  They do all kinds of different things but we like "fade" the best.

The other lighting option is the disco ball.

 

Here is the pea pod in action.  Little Miss Deep Pressure is a big fan of this one.

Here is our assortment of sensory balls.  Anya particularly likes the "spaghetti" one.

I think the overall favorite swing is the lycra swing.  They both like to get completely inside of it like this and watch the lights above them.

The other swing is our platform swing.  You can use this with or without the tube.

The thing Oksana has in her hand is a vibrating pillow.  She loves to swing while she squeezes it.

Eventually I'd like to add more and possibly paint but for now we are set!  I think the boys like it as much as the girls and I have to say that on days when I'm at my limit I can get regulated in here too!  I personally like the lycra swing as long as I sit still.  My old belly can't handle that swinging motion!  If you have any other ideas to add to the room I'd love to hear them!

Weddings, airports, and snow days....oh my!

Life has been "interesting" here since Christmas.  A couple of months ago my dad proposed to his girlfriend.  I love her so this was very exciting news!  They set the wedding date for January 4 and asked if we might be able to come.  I just didn't see how that would happen.  At this point the only person who can watch my kids overnight is my mom and she lives in another state.  We considered that maybe I would go and Larry would stay home.  In the end we just asked mom to extend her Christmas stay and watch the kids so we could both go.  We also decided to surprise my dad rather than telling him we were coming :).

The tickets were purchased and we counted down the days.  Before we left my mom seemed pretty concerned about Anya.  Anya is a very busy rascal and to be quite honest she was driving my mom a bit insane.  :)  As we were leaving there was a forecast of a major snow storm at home the day we were supposed to get home.  We were all worried.....especially my mom.  Oksana expects things to be just like they should and when that doesn't happen, look out.  We left on Friday and we were to come home on Sunday.

We were able to give my dad the shock of his life and had a very fun weekend but the cloud of worry hung over us the whole time.  We watched weather report after weather report hoping to find better news.  Oksana was having some struggles but we held onto hope that we would make it home.  On Sunday morning we saw that the snow had started later than anticipated and we were hopeful that we might get in before the snow piled up too much.  As we all waited at the gate for our 11:25 flight there was an announcement that our plane was coming and we would be boarding soon.  The relief was huge but then nothing was happening.  A short time later they came back and said the flight was cancelled.  We rushed to get on another flight and got the last 2 tickets on the next flight out at 6pm.  I called my mom and she seemed very concerned.  Things were not going well at home at all.  The behaviors that Oksana was exhibiting were almost exactly what I went through this summer with her.  Unfortunately at this point there was nothing we could do but pray.

We hunkered down for a long day at the airport and prayed for this next flight.  By 3:00 it was cancelled.  We again got the last 2 tickets on the next flight out at 8:00.  I didn't want to tell my mom until we had a better idea of whether or not this would happen.  This was the last flight out.  If this flight cancelled we would be spending the night there.  As it got closer to 8 we heard that the airport we were flying into was open so I called to let her know.  She was pretty much beaten down at that point.  She told me that she could not take one more day watching Oksana and told me she will not be doing this again.  We HAD to get home.

The flight was delayed and delayed but around 9:45 my behind was sitting on a plane waiting to take off!  We arrived home and had a very slow and snowy drive home.  At 1am we arrived home to find that we needed to shovel the mound of snow blocking our driveway to get in!!! 

Monday morning Oksana had no idea we were home.  She came busting out of her bedroom with an attitude, screaming at the person that she thought was my mom.  When she saw me she stopped dead in her tracks.  We promptly removed some privileges for her behavior.  It wasn't a great day.

Of course we knew Monday would be a snow day and that was perfect since we got home so late.  Walking in the door and then sending them to school might not have gone well.  The problem is that then school called off Tuesday, and Wednesday, and today.  DONE doesn't begin to describe all of us at this point.  I just found out on the district website that school is in session tomorrow.  Did you hear my sigh of relief through the computer?!

Now as soon as life gets back on schedule I have to start the process of finding a caregiver for Oksana.  Never leaving her is not an option, and I just lost the one person we had who was really good with her and willing to put up with her.  That is an incredibly daunting task to me at this point.

That's all for now but after the weekend I will get some posts up about our respite options as well as some pictures of our sensory room!