Bike!

Our family is involved with Variety Club here in St. Louis.  They have a number of programs for kids with special needs including helping them get equipment, therapies, etc.  They help us pay for private therapy for both girls.  They also just helped Oksana get her very own bike!  They have a big event once a year called Bikes for Kids.  Tons of bikes are donated and there is basically a party to present them to all of the kids.  They only give out a certain number a year, and you have to qualify, which really just involves filling out a form and getting a letter from a doctor and therapist stating why your child needs a bike.  Oksana has been riding an adapted bike in therapy for awhile now and she loves it!  When we told her she would get one of her own she was so excited and the first thing she wanted to do was race Evan ;). 

A couple of months ago we went to a bike fitting where they found just the right bike for her with just the right seat, etc.  They even let her pick the color....pink, of course.

Last weekend was finally the day she got her bike!  The event was at the gym of a college in the area.  The Rams mascot and cheerleaders were there and the place was full of kids and families.  We waited in the halls while everyone loaded into the gym.  When it was time to go in they lined us up in alphabetical order and then we went into the gym with people screaming and cheering and the kids were brought to their bikes.  Oksana was a bit overwhelmed but once she got on her bike she was thrilled!  They thought of everything.  They gave her a pink helmet to match the bike and put a bell and a flag on it.  Those are her favorite parts!  Unfortunately it was in the 30s that day so we didn't do
much riding.  When we got home I let her take it around the court a couple of times while we froze to death and then we parked it in the garage to wait for a decent day to ride.  Here are some pictures:

Waiting in the halls in her Bikes for Kids t-shirt.  She is using forearm crutches here.  I'll have to blog about that soon.



Rams mascot and cheerleader.  The cheerleaders were giving out pictures of themselves half naked to sign for the kids.  I probably could have done without that but they were very nice.

Happy kiddo!



The flag.  It cracked me up how much she loved the flag!

Here is a video of her riding it.  It has a handle on the back that I can use to help her steer and brake.  It's pretty cool!

 

Make a video - it's fun, easy and free!
www.onetruemedia.com

 

Suspended

Last Wednesday, after 4 very good days for Oksana, I got a call from the principal.  That is never good.  I adore our principal.  She has been an incredible support to our family, but I'd rather not hear from her in the middle of the day.  When she has to call it is really bad and usually means that Oksana had to be restrained.  She began explaining to me that Oksana was in the lunch room.  She dropped a piece of bread.  Now this was bread from Panera that I had sent with her to have with soup.  She loves this bread.  When she dropped it her para at the time did what anyone would do...she threw the bread away.  Now I don't know what kind of mood or frame of mind Oksana was in before this but you can cue the rage at this point.  She went insane and punched her para in the face.  Fist?  Open hand?  These are things I've been asked and I don't know.  In the end it doesn't matter.  She went on to require 3 paras to restrain her to stop her from attacking them.  Once they got her hands down she started trying to bite them.  They finally got her back to the special ed room where she continued to rage.  When it was over they let her sit down and eat at which point she started laughing hysterically (mania). 

I think everyone was at a bit of a loss as to what to do.  She is on an IEP so technically does not follow the same discipline guidelines as other children.  The guideline for this is out of school suspension.  The principal wanted to give it a try to see if it would have an impact.  Of course we also feared that it would have the opposite effect and that she would like it.  I assured her that if she wanted to try this I would do my best to make her day boring.  So she spent the day here Thursday cleaning her room and sitting around doing nothing.  I don't think she was happy but I'm also not sure it was a great deterrent. 

The other conversation I had with the principal that day was about the possibility of finding another placement in the district for Oksana.  We have discussed this before but it never went anywhere.  I'm curious to see if it does this time.  Our school has honestly done EVERYTHING possible to accommodate Oksana and help her.  When she is still punching paras we are out of ideas and may need to look at a classroom setting that is more equipped to handle her behaviors.  I don't know if, when, or where that will happen so I'm just sitting tight until the next episode.  We have started the new meds since that day so hopefully they will help her too.   I hate bipolar disorder.

Stigma

I've been thinking about blogging for weeks now but I haven't known what to say.  I find myself really struggling with telling people the truth about Oksana.  I find myself asking constantly "Should I tell this person?", "Should I share that with this person?", "Will this person see Oksana differently if I tell them?".  There is such a stigma attached to mental illness that isn't present in any of her other diagnoses and I am feeling that weight of that stigma.

We want and need support but if I really told people the things she says and does they would never look at her the same way again.  Very few people know the true depth of Oksana's mental illness.  I even struggle with it on this blog.  I wrote a post that I have not published about the first week in November when she was very unstable.  Some disturbing things happened, and we are now adding yet another medication to her already insane number of meds. 

The thing about it is that the vast majority of the time Oksana is just Oksana.  She is the same kid, with the same interests, and the same life as the girl before bipolar.  Yes, we have periods of time when she isn't that kid anymore, but I don't want people fearing her or not wanting their kids around her.  It's such a fine line and a horrible stigma.  I want to be a part of breaking the stigma but will that come at a cost?  These are the things I ponder these days......

FUN!

I'm happy to get to write a fun post for a change!  We've had a lot of things happening here and I'm way behind on posting!

Evan recently competed in another horse show.  It was a fun one sponsored by the barn where he rides.  He is primarily jumping 18 inch jumps right now but also does 2 feet now and then.  At the end of the show they get to dress up with a horse.  Evan started thinking about  next year's costume by the time we left the show! 

As if that wasn't exciting enough, Larry and I got tattooed :).  This was my first and his second.  We had both been wanting to get our wedding rings tattooed on.  We decided to get Mt 19:6 on our ring fingers.  It says "So they are no longer two but one flesh, therefore what God has joined together let no one separate".  Larry's worked out good to look like a ring but my finger was just too small so we decided to get mine up the inside of my ring finger and I still wear a small band. 

 

 



Clayton was baptized this month too!  This is such a big deal for him because he is fearful of having his head under water.  He is my biological sensory kid :).  Even though he gave his life to Christ many years ago I thought it would take him much longer to get baptized.  We are so proud of him!  Larry got to baptize him and to mark the day we bought him a sword with Ephesians 6:17 engraved on it "Take the helmet of salvation and the sword of the Spirit, which is the word of God".  He absolutely loved it!

Finally Halloween and then I think I'm caught up!  Pumpkin carving is always fun with my crew.  The boys love to be creative.  Oksana wanted a princess with a smiley face. 

This is Evan's "scene" of Bob shooting the apple over Joe's head :).

My new favorite picture!  It captures our insanity well :).

Preciousness!

Pumpkin Pi!

Oksana wanted to be Pocahontas and I was going to have Anya be Elmo.  I searched and searched for the perfect Elmo costume.  I finally found JUST what I was looking for on Etsy.  I ordered on Oct 3 and even corresponded with the lady about it.  The week before Halloween...no costume.  I started emailing her to ask if it would be here on time with no response.  Next thing I know I can't even get into her etsy page like she shut the whole store down.  UGH!  I decided just to throw her Cinderella costume from last year on and she didn't want anything to do with it so she went out as a cute kid with Down Syndrome!  This year went much better than last year.  She screamed "NO" at the first couple of houses and then quickly figured out what was going on.  After that she was ready to hit every house in the neighborhood!  The boys just passed out candy this year but had a blast.  It was rainy and cold so we didn't have a ton of kid but that just means they got to eat the leftovers! 

 

I think that just about sums it up!  Whew....on to November!