Adapting her Environment

On the first of each month I will be blogging about some aspect of living with CP as part of the CP Connection. Last month's blog was about life in our house with CP and this month I'm going to talk a bit about how we adapt Oksana's environment to give her as much independence as possible.

I'll start with our handrail because my husband just installed it this morning and the independence that it gives her to get in the house by herself is fantastic! Going down stairs is much more challenging so we are still holding one hand to go down while she holds the rail with the other.


Another thing we adapt is how she gets in our van. This tiny step stool allows her an extra step so that she can get in the van all by herself. Of course we still stay near because the one down fall is that the stool can be a little unstable.


A new addition to our house is an adapted bike! This was given to us by our pastor who also has a daughter with CP. She has outgrown it and it's probably a TINY bit big for Oksana so it will last us for a long time!

Here is a video of her riding it for the first time. She can ride independently if it is a bit of a downhill grade. A flat grade is a bit more challenging, and she needs help with even a small uphill grade. She will get stronger as she uses it more.

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Those are just a few ways that we adapt. We also use an insert for the toilet but I didn't figure you needed a picture of that ;). If you have any other ideas I would love to hear them!

The power of prayer

Before I had even seen Oksana's picture a woman named Pat saw her picture and fell in love with her. Pat had 2 children at home with special needs and was not in a position to adopt Oksana but she could pray, and that's just what she did. She signed up to be a prayer warrior through Reece's Rainbow for this little girl in an orphanage in Ukraine who had CP and microcephaly just like her son. After a couple of months of prayer she decided to jump on the Reece's Rainbow's website again and the little girl's picture was gone! She immediately emailed to find out what had happened and learned that she had a family working to adopt her. I know that thrill...the thrill of a child you love finding a family...and Pat was so excited! Shortly after she found our blog and while reading the description of our family she learned that we lived in Little Rock but were originally from St. Peters, MO. Imagine her shock because Pat lives in St. Peters, MO!!! She contacted me to tell me that she had been praying for Oksana and lived in our hometown! She has followed our journey from day one and we have kept in touch on and off through the last 2 years. A week or so ago we decided it was time to meet so we arranged to have lunch at Cracker Barrel. Oh what a wonderful time we had with Pat and her precious son Josh. We immediately clicked and had a wonderful time learning about our families and sharing common experiences of raising children with special needs. This was a true honor for us to meet the woman who had prayed Oksana into our family! We are excited to get together again! Here is a picture of us after our lunch. The look on Oksana's face is the new thing she does when someone has a camera and says "smile". She's a character!

Pat, I know you are reading this and I have to tell you that Oksana made a "finger friend" today and named him Josh :)!

Christmas!

We had a wonderful time remembering and celebrating the birth of Jesus! Our kids Christmas lists reflected their personalities well. Between Larry and I, their grandparents, and other family members, they were all able to get much of what they asked for.

Clayton is our video guy. His wish list included a green screen, new camera, tripod, video editing software, and Spy Gear.



Evan is our horse kid so all of his gifts were horse related. He wanted a saddle pad, half chaps, new breeches, riding socks, gift certificates for a horse shop, horse figurines....you get the point!



Oksana's number one desired item was a "peanut ball", a therapy ball in the shape of a peanut, with bumps on it. She also got a bean bag, lots of pretend play toys (dolls, doll houses, etc.), and fire trucks!



We loved Oksana's new dress that was generously given to us by our friend Julie!


We had a great time enjoying Christmas Eve with my family.


And then had a great Christmas day goofing off with Larry's family!


We hope that your Christmas was blessed!

A New Tradition

A friend of mine recently posted on Facebook about a cool tradition in her family. It is a family sleepover night. They eat junk food, play games, decorate cookies, get new jammies, and sleep by the Christmas tree. We loved the idea and decided to have a Loraine Family Sleepover on the Friday before Christmas! The kids all got new jammies, we had pizza for dinner, decorated cupcakes, and played Wii games. After Oksana went to bed (in her own bed since sleeping by the tree wouldn't work with her bed time), we watched The Polar Express. The boys slept by the tree but Larry and I slept in our own bed so we could actually get some sleep! The next morning Evan told me that the tree was too bright and they had to turn it off to get to sleep. I told him that maybe next year he could just sleep in his room and he wanted to know why he would do that when it was so fun to sleep by the tree! Well OK, I guess lights or no lights it was a fun adventure!

CRAZY KIDS IN THEIR NEW JAMMIES!




WII BATTLE!


DECORATING CUPCAKES!

Revisiting the IEP....already - Part 3: Grief and Acceptance

I forgot to mention something in my last blog that backed up my theory that the intensity of the work in class was a factor in her behavior problems. Oksana has always loved school. Just recently she's started saying "Is this a school day?" every day when I wake her up. If I say "yes" she is fine and goes on with her day but if I say "no" she cheers. Very unusual for her. The other day I was asking her what she liked best about school and what she liked least. When I asked what she liked least she said "The hard work in my classroom". Bingo! This is a hard working child. She will meet a challenge head on as I've seen her do over and over again in the past year and a half but when it's definitely above her ability level it is terribly frustrating.

With that out of the way, on to part 3. Have you ever been in a situation where something happened it was perfectly OK but you still had to grieve it? Maybe not because I can't think of a time when I felt that way before now. When I got the note home that they wanted to consider adaptive PE, and then talked about giving her more time in the special ed room, I was in complete and total agreement. I want whatever is best for her to be successful in school. And yet I surprised myself by feeling grief. I was sad, mourning, in a sense, the fact that she was unable to live up to those high hopes we all had for her at that IEP meeting. Let me be clear that I was not blaming her in any way, it was just a step in understanding how much she is not like other kids and coming to grips with that. One of the main reasons I was so surprised by this is that I chose CP, I chose microcephaly, and I guess I felt that would exempt me from the mourning that many parents experience when they learn that their biological child has a disability....but I was wrong. We set the bar high for Oksana and now it has to be set lower and that just made me sad. I had to mourn what Oksana could have been had it not been for CP, or microcephaly, or her most formative years being spent in an orphanage. I have to admit that I was frustrated with myself for these feelings. Was I not accepting Oksana as she is? Was I not equipped to parent a child with a disability? Then one day it occurred to me. I was being a MOM. A mom who loves her daughter. I was going through what many biological parents go through in the early years of learning that their child has a disability and fully grasping what that will mean for their child's life. Realizing that allowed me to feel the sadness I needed to feel and be able to move on to acceptance and prepare this kiddo to reach whatever potential it is that she can reach.

There will be one more part to this story but it will come after the new year. Oksana was supposed to start adaptive PE yesterday but she had a para sub and she didn't make it there. As you can imagine that didn't go over too well! She should start today so I am anxious to hear what she thinks. Christmas break starts Friday. After the break she will do about another week of adaptive PE so we can be sure it is a good fit and then I will hear from them to talk about adjusting her hours and rewriting the IEP. I'll update you when that happens.

Revisiting the IEP...already - Part 2: My kid got kicked out of PE

Before I start this blog I have breaking news. After months and months of trying to teach Oksana to spell her name....she DID IT! This morning at breakfast she spelled her name 2 times with NO HELP! I jumped up and down and started dancing around the room. She thought it was so funny. I told her she needed to tell her teachers that she could spell her name and she said she wanted to see them dance! I had to explain then that not everyone is as crazy as I am :)!

OK, back where I let off. PE was becoming a trigger. This was so surprising to me because at the beginning of the year this was her FAVORITE class. Here is my understanding of what was happening. I'm not sure what they did at the beginning of the year but right now they are playing competitive games. Apparently she just isn't ready for that. So again remember that we are dealing with someone who is developmentally 2-3. She was getting tagged out in games and absolutely blowing a gasket. Major temper tantrum, pulling her para's hair, hitting anyone who came near her, etc. She had to go to time out, the school counselor had to come talk to her, etc. So this happens once and you can live with it but it was becoming a regular occurrence. Now take away the developmental factor and let's consider the physical factor. When we decided not to do adaptive PE it was because the PE teacher was doing a fantastic job of adapting for her in class and she also had her para to help adapt. So, for example, one day the kids ran the soccer field a couple of times and Oksana walked it once with her para. Well when you get into a game like this how are you supposed to adapt short of picking her up and running with her? She can't run. Now EVERY kid there is faster than her and she will ALWAYS be the one out. How incredibly frustrating for her. Again, the school is wonderful and I know they made efforts to let her be the one who is "it" but they can't always do that. Also, one day she was it and class ended. That caused a temper tantrum too. So finally I was informed that this just isn't working and they wanted to consider adaptive PE. I agreed completely so today marks her first day of adaptive PE. I'm anxious to hear how it goes. It is a shorter time period, only 20 minutes or so where the other PE was 40 and it is 5 days a week instead of 2 which surprised me a bit.

So yesterday the diagnostician called me to talk to me about it and she informed me that she would go to adaptive PE first thing in the morning and then while her class is at PE she would go to the special ed room. I asked what the class was doing at that time in the morning. I simply wanted to know if it was circle time because I know she likes circle time. She said they were doing morning work, which I take to mean worksheets, and she said "We will make sure that she makes up that work while she is in the special ed room". At that point I said "Really, don't bother." I went on to explain to her that the work is way above her level and that I know it is being adapted but imagine how frustrating it is to constantly be given work that you don't understand while you watch the other kids do it with no problem. I told her that I felt like this was the source of many of her behavior problems. She was very understanding and said it sounds like we need an IEP rewrite so that she can spend more time in the special ed classroom. We both agreed to get through the holidays and let her get accustomed to adaptive PE to be sure it will be a good fit for her and then we will rewrite.

What has surprised me about all of this is the feelings I had about it.....

To be continued.....

Revisiting the IEP...already - Part 1: Background Story

I'm going to do this post in parts because as I started typing it out I realized that it was going to be REALLY long in one piece. I've actually been debating blogging about the events of the past few months many times but never did, and I think part of that is because I had no solution to the struggles we were having. Now we are making some headway so I will start by catching you up with a bit of the background story leading up to the upcoming changes in Oksana's IEP.

In early October we had our second IEP meeting, after all of the testing, where we were ready to set some things in stone. I blogged about that here. I remember that when we walked in they handed everyone a piece of paper with the results of weeks and weeks of testing on it. All I saw were the words "Low", "Very Low", and "Not able to be recorded" all over the paper but I wasn't surprised by that and was ready to hear when they had to say. The meeting was full of energy. Everyone was captivated by the little Ukrainian who had entered their school and they were amazed by her sweet spirit, hard work, and huge smile! Despite her test scores there was much encouragement and hope for her future. It was this day that we decided things like how much time she would spend in the regular classroom, how much of each of the therapies she would get, whether she would need adaptive PE or could stay in regular PE with the rest of her class, etc. In the end I was amazed at the wonderfully high expectations they had for Oksana. This team didn't see scores, they saw potential and they gave us everything we had hoped for plus some that we would have been more than happy to flex on. At that time it was decided that she could stay in regular PE and that she would spend 76% of her day in the regular classroom with some time in each of her therapies, as well as some time each day in the special ed room. 76% of the day in the regular classroom is a huge amount of time and we were all very excited. There was an energy in the room and everyone expressed their desire to see how far and fast she would progress from there.

Fast forward to around late October. I started getting more and more notes home that she was having behavior problems. This was surprising and I thought maybe she was just finally comfortable enough to show some of her true colors and push back a bit. I started offering her an incentive. For 5 good days at school she would get to go pick out a balloon at the store (a HUGE deal for her). It worked for a little while but the struggle for good behavior was getting harder and harder. She was having blow out temper tantrums at school involving pulling hair, hitting teachers, etc. This is stuff we had not seen for a LONG time. I was struggling to figure out what in the world was going on. I had a theory though. About the same time that this all started I remember looking at the work that Oksana was doing and thinking that things had really stepped up. At the beginning of the year they were working on colors, shapes, letters, counting to 10, etc. and Oksana was right in there with them. They are now counting to 75 (we are celebrating that she has made it to 8) and starting to read (if i could get her to spell her name I'd have a party!). The gap was widening and fast. I suggested this to the para as a possible reason for the behavior problems and she assured me that she was adapting everything (we love her and she is doing a great job with Oksana).

One thing we had noticed is that it was not uncommon for these blowouts to happen during PE. They were happening in a variety of situations but PE was definitely becoming a trigger......

To be continued......

Imaginary friends

Let me introduce you to the "people" we brought home with Oksana.

Meet Tuke (rhymes with Luke)


Tick


And LaLa


Her left hand in that certain position is Tuke, her right hand in that certain position is Teck, and her right hand in the slightly different position is LaLa. Tuke and Teck are her primary friends. LaLa comes quite a bit too though. Occasionally her hands turn into other "friends". I've seen a baby and a dog. I asked her when I took these pictures if there were any others and she made me this:

She said it was a doctor.

Much of her days, especially after getting home from school are spent talking to these friends. Usually her conversations with them involve a recent event in her life or her current obsession. Here is a short video of her talking to them. See how she holds them up to her face to talk to them? It's hard to hear her but she is talking to them about a rescue...as in firefighter....see what I mean?!

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She also makes strange noises when she does it...kind of clicking noises and I'm not sure what those are.

We've often wondered if she had these friends in the orphanage. It would make perfect sense that this is where they would develop as a way to entertain herself. In July we were celebrating her gotcha day and we were looking at pictures. Look at what we noticed:


Do you see Tuke?

In case you were wondering Tuke and Tick are not allowed in school. She can tend to get obsessed (shocking I know) and block other things out so there are certain places that they are not allowed. She is very good about putting them away when she is told to.

We have had some concern about them. This is how she plays. She doesn't play with toys and she doesn't interact with other kids...she just talks to her hands. We worry that this is hurting her development so for Christmas this year she is getting some Little People sets (a fire truck with fire fighters and a house with a family). We are going to try to encourage her to do her imaginative play with them more and see if we can't draw her into something a little more developmentally appropriate.

I'd love to know if any of you have dealt with imaginary friends and how they manifested themselves in your house.

Firehouse!

I'm on a blogging kick lately! Don't worry, life will get boring again soon enough!

Not everyone knows this but Oksana has this funny little personality quirk. She is obsessive. I mean really obsessive. She is always obsessed with balls and balloons but then there are other things that come and go. Right now the obsession is anything to do with firefighters. It's all she talks about, reads about, thinks about, etc. Last week a paper came home from school saying that a local fire station was going to have pictures with Santa, coloring, cookies and juice, and a chance to check out a fire truck so we knew where we would be on Saturday morning!

When we got there a fire fighter took a liking to her and let her do all kinds of extra stuff...she got to sit in the drivers seat of the truck, go in the station to see where they live and sleep, etc. She was in heaven! He was so sweet to her and told us to come back sometime when there wasn't other kids so they could give her one on one time! The pictures do a great job of showing you how happy she was!






This last picture shows another one of her little "quirks" ;). If you look closely you will see that she is telling her imaginary friend, who happens to be her hand....yes I said her hand....,that she is going to see where the firefighters sleep. Which reminds me, I should blog about her imaginary friends sometime. The good, the bad, and the strange!

Anya sighting!

Another family was in Anya's orphanage last week picking up their son and got to meet Anya!!! They sent me a couple of pictures and a precious video! They said she is a busy girl. She was all over the director's office looking at toys. Oksana is also very busy and always on the move so I've decided that between the 2 of them I should never have to pay for a workout again! I'll stop writing now and share the cuteness!

Microcephaly

This post is for Kim...and anyone else who might have questions about microcephaly. Anyone can google microcephaly and get medical information about it so I'm going to share a bit about Oksana's diagnosis and how we got it.

All of Oksana's documentation from Ukraine lists her as having microcephaly. We were often told that you can't always trust what they say, and when we saw pictures of her we had a really hard time believing she was microcephalic. I had visions in my head of kids with teeny tiny heads that obviously had microcephaly. When we got to the orphanage the doctor there told us that Oksana does NOT have microcephaly. That made sense to me, so when we brought her home I would mention to doctors that microcephaly was on her records but that the doctor at her orphanage said she doesn't have it, and they would look at her and agree. I got to the point that I just stopped mentioning it. Early last year Oksana had an MRI while we still lived in Little Rock. They called me with the results and said that her brain appeared shrunken...along with a lot of other stuff. Then we moved to St. Louis and saw a neurologist at Shriners. I never mentioned the microcephaly to him but I did tell him that we were told she had a brain that appeared shrunken. He immediately pulled out a tape measure (something NO ONE had done up to this point), measured her, and then got out his little book to plot her head circumference on a growth chart. Microcephaly is by definition a head circumference that is more than 2 standard deviations below the norm. She fell RIGHT below the 2SD line...basically touching the bottom of it. I asked him if that still meant she had microcephaly and he said yes. He also made it clear to us in very nice terms that microcephaly is a game changing diagnosis when it comes to her cognitive functioning along with her current brain damage. Of course he encouraged us that we can't possibly know her potential and to continue to push and encourage her.

To be honest I still had trouble believing this. I talked to a friend who is also a doctor and she said you can never tell by looking at someone. She pointed out that Oksana has a narrow face and so it may not be as obvious as on some other children. I jumped on the internet immediately and found this website with pictures of kids with microcephaly. When I saw that on many of these kids you couldn't see microcephaly, I knew deep down that the diagnosis was right. This friend also mentioned that for a good solid diagnosis (especially being so close to the line) it is best to have 2 separate people measure and compare those results. The next time we went to the pediatrician I asked her to measure Oksana's head and she got the exact same results and also told me that she indeed still falls in the range of having microcephaly even though it is so close.

So what does this mean for us? Nothing really. I guess it does help with school services and funding, but it doesn't really change who Oksana is. It's always in the back of our minds as we consider where she is developmentally, but there is really nothing we can do about it aside from what we would do with all of our children which is to encourage them to grow to their fullest potential...whatever that potential may be.

Life in our house with Cerebral Palsy

Sometimes I will have someone contact me through Facebook or my blog to ask about adoption or Cerebral palsy. Recently I had someone contact me with what I thought was a great question. This woman was considering adopting a child with CP and she wanted to know what daily life was like for us. In other words she wanted to know what it looks like to live with CP in our house. She was wondering what made life with CP different. I'm going to share with you what I wrote to her. Before I do I'll say that life with CP looks different in every house. CP is interesting to me in that it can be so mild that it is virutally undetectable...or so severe that the person requires total care...and everything in between! Another reason CP might look different in my house is because Oksana also has an intellectual disability, not because of the CP, CP does not cause an intellectual disability, but it is brain damage and Oksana just happens to have plenty of it, plus she has microcephaly (her head is smaller than normal for her body size). On most days I would tell you that the cognitive aspect can be more challenging than the physical aspect! Most of her friends with CP do not have any cognitive delays. This is what I wrote in response to the question as an example of what a day looks like here and the things that we need to do and consider because of CP.

Having a child with a physical disability certainly changes daily life. Everything you do has to be seen through the lens of the disability. So for example, to start the day...Oksana gets out of bed and she has to have her toilet seat adapted so that she can sit without having to support herself which can be very tiring (we do this with an insert). She has to be streched EVERY SINGLE morning before she starts her day which takes 10-15 minutes. I have to do much of her dressing because she doesn't have the motor skills to do it all herself. I have to be thoughtful of what I chose for her to wear. We don't do dresses at school because she is not able to keep them out of the toilet ;), and leggings are best because they allow her the most independence since they have no fasteners. Of course she puts on her AFOs and shoes (not many cute shoes here, AFOs tend to seriously limit your shoe choices!) and she is off to breakfast. Depending on what she is eating she may need assistance eating breakfast. She's getting MUCH better at this but, for example, scrambled eggs can be tricky because she is not good at balancing food on her fork and getting it to her mouth. If you can't poke it or it doesn't stay on the fork easily she will need help. At school she needs an aid full time but this is also for her cognitive delay. Physically her aid helps her maneuver through the room (even getting in and out of a chair is a challenge without some help), move through the hallways, helps adapt her PE, helps her eat lunch, helps with her toileting (no toilet insert there), etc. When she is home for the day if we have errands to run, or an activity to go to, we need to ask ourselves how she will get around...where are we going?...can she sit in the cart?....can she walk, or is the store too big?....do we need to bring her wheelchair? If it is an activity, can she do it independently? If not what do we need to do to adapt? At home she is really self sufficient. Our home is set up so that she can maneuver around it with no help. These are things that I'm not sure a lot of people think about who don't live life with a child with a physical disability. That's the reality of it but here's the thing...just writing that I'm thinking to myself, wow, that sounds much worse than it is! When she first came home it all felt horribly overwhelming. But I don't even think twice about all of it now, it's second nature. I make those decisions, do those things, and ask myself those questions without even realizing I'm doing it.

If you or your child has CP how is this similar or different to your daily life? If you don't live with CP what surprised you or what didn't you know about what a typical day looks like? If you have any questions about CP, Oksana, or what a day with CP looks like, post it in the comments and I'll answer it in the next post.

Thanksgiving Update

I'm back! We had such a wonderful time with the Stumbos! I've been trying to figure out how to tell you all about it without making this post a mile long so I've decided to give a short description of each day and then add photos if there are any. Here we go...
Wednesday: We drove to WI and arrived there around 3:30. We were all so thrilled to be together again! If you don't know, we first came face to face with them back in July after many months of Skyping and talking on the phone. We really just spent the evening settling in, hanging out together, playing games, and staying up way too late talking!

Thursday: After a quiet morning, Andy, Larry, and the kids all went out to jump in a huge pile of leaves while Ellen and I started cooking. Neither one of us enjoys cooking but we pulled together a wonderful Thanksgiving dinner, if I do say so myself ;)! It was such a blessing to spend this day with them. After the kids were all in bed Ellen and I decided to try to hit the sales starting at 9pm at Toys R Us. We pulled up at 9:30, saw the line still a mile long to get into the very crowded store, and then we turned around and drove back home! After that we stayed up way too late talking!

Stretching together!

Nichole LOVED Larry! I think he loved her too ;)!

Ellie and Oksana checking out the turkey. Oksana was fascinated by this and kept going "EEEWWWW, UGH, OOOHH!" through the whole thing!

It was cold but the kids had a blast in the leaves!

All together for Thanksgiving dinner. We had much to be thankful for!

Ellie, Nina, and Oksana...3 beautiful girls!

Nina and Oksana!


Friday: We got up and moving Friday morning and headed out to Chicago to see Legoland! This was one of the highlights of the trip for our boys. We all had a great time and ended up staying there for a good part of the day. Once we made it back home we had enough time to get dinner, play a bit, and get the kids to bed. After that we played games and stayed up way too late talking...do you see a theme yet?

Albert made from Legos!

A small part of the incredible replica of the city of Chicago made out of Legos!

Our kids LOVED this ride. They rode it over and over and over again!

These Lego creations blew my mind!

At the 4D Lego movie!

Nichole and Ellen on the ride!

Clayton won this in a contest. He had to build what he wanted for Christmas out of Legos. He buit a Mac laptop...the Lego kind is about all he's going to get!


Saturday: Another quiet morning and then we loaded up and spent the whole afternoon at Monkey Joes! Monkey Joes is a place full of inflatable bounce houses, obstacle courses, slides, etc. Everyone had a great time but it wore us all out!! I bet you know what we did after the kids were in bed! We made it to about 11 and then almost all died from exhaustion :)!

Monkey Joes!


The girls reading books together before bed...so sweet!



Sunday: I have to say that we did so many really incredible things this week but Sunday morning was an absolute joy for us. Andy is the pastor of a church that we had heard so much about so we were very excited to experience it for ourselves! Larry got to play guitar and Ellen and I shared our adoption testimony and how God had worked in our lives through adoption. It was so much fun and a real privilege for our whole family to experience their church. Right after church we hit the road back home, but not before stopping for fried cheese curds!

It was an incredible 5 days...tonight we are going to bed early but missing the Stumbos very much!