"Spring" happenings

We live in the midwest and as you may have heard we had a massive snow storm yesterday that burried us in over a foot of snow.  I won't even begin to tell you how much I hate this and I may or may not have had a temper tantrum over the whole thing :)!  We went out to play in it and all Anya wanted to do is swing.  See..someone around here is thinking like it's spring!

 

The night before the massive snow storm we celebrated Easter with Larry's family and my mom.  Larry is going to be at church all weekend Easter weekend playing guitar so we are just going to hang out at home and celebrate Easter as a family that day.  Anya got her first experience dying eggs.  It was so funny!  She did not get it at all.  She kept trying to splash the liquid, lick the dye off of the eggs, and crack the eggs open to eat them!  Here are a few pictures and a link to a video of her coloring eggs since silly Blogger isn't cooperating with my video.

http://www.onetruemedia.com/shared?p=121a5f8ce76db671b8b41e5&skin_id=701&utm_source=otm&utm_medium=text_url

One last thing and then I'm all caught up.  Last week Oksana was a mermaid in her first grade musical!  It was called oceans of fun.  Her paras put together her whole costume.  I kept offering to help but they said they had it all covered.  She looked darling!  She was sitting on her walker that was covered to look like a rock so she was a mermaid sitting on a rock.  Her feet were in a box that was decorated as her tail.  She didn't really know the words to the songs but she waved her scarf like a pro and had a great time being on stage!

When she wasn't waving her scarf she was checking out her skirt shining in the light ;).

Oksana with her 2 paras (front) and her special ed teacher (back)

A Time for Change

It is a season of change in our lives right now and we are excited about it.  There are two main areas that we have recently looked at and said "Something has GOT to change." 

The first area is Oksana's care.  I mentioned in a recent blog that we are finding a new psychiatrist for Oksana but that has only been the beginning of the doctor overhaul we are doing.  I'm going to make a very long story short here.  Oksana is regressing physically and she is getting all new doctors and a bunch of new therapists too.  We are keeping her school therapist since she is fine for what school therapy offers (which isn't much) and we are keeping her pediatrician who I absolutely ADORE.  Everyone else is getting the boot and we are bringing in a whole new team.  We are leaving Shriners.  No one there is forward thinking when it comes to Oksana's care.  Once every 6 months they watch her walk up and down a hall and send her home.  I've just been unimpressed really since day one there and I've hung on thinking maybe I was crazy since they are supposed to be great.  I did love their orthotists, her neurologist is awesome, and did I mention that everything is free?  Well there are other good orthotists, I can see her neurologist out of his office, and nothing for free is worth the physical regression I am seeing in Oksana. 

I am so excited about her new team.  We are just starting to put them together.  She now gets 3 extra hours of therapy a week at a pediatric specialty hospital called Ranken Jordan.  She gets an hour each of OT, PT, and speech and her OT and PT are interested in seeing her twice a week.  This Thursday she is seeing a Physiatrist for the first time that came highly recommended to us and she is seeing a new orthotist.  Both are seeing her with her PT at Ranken Jordan.  The ideas and techniques they are planning on using with her are things that I keep saying "Why hasn't anyone at Shriners recommended this?"  I'm so excited to have a team who wants to be pushing forward and making wise choices for Oksana so that we don't see any more regression.

The second area of change is homeschooling.  Back when Clayton was in Kindergarten through 2nd grade he went to a homeschool program that was the perfect combination of school and homeschool.  He went to school there 2 days a week and then they sent home a schedule for us to do at home the other three days.  When we moved to Little Rock we obviously had to let that go.  When we moved back I looked into it again but the one thing about a program like that is you have to use their curriclum.  We had some great curriculum that I wasn't willing to give up so we decided against it.  For a number of reason we have decided that the next school year is the perfect time to get back into that program.  It will be a great program for the boys to take on more responsibility for their schooling, prevent laziness, keep us all accountable to someone else,  take the slack off of me for awhile, and prepare Clayton for college as he enters high school.  The boys feel ready for this and next week they are both shadowing for a day in the program to meet some of the kids and get a better feel for what next year will look like.  I'm very excited about this and with Anya going to school in the fall with Oksana I will have 2 whole days to myself!  I guess that means it's time for another child, right?! :) 

I'm not a big fan of change but this is good change for all of us!

Energy Drink

3rd and final post of the day.....

I mentioned before that my boys love to make videos. Clayton has become so interested in it that we got him a good video editing software for Christmas. He has been learning how to use it and this is their latest "infomercial" for a 48 hour energy drink. For some reason One True Media cut off the sides. I have no idea why but you'll get the point. Enjoy!

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

Trauma

Blog #2 for the day....which may or may not be the last one :). 

While I'm on a kick of recommending things today, here is the next one.  Many of you, especially if you are in the adoption community, have heard of Heather Forbes.  She is the author of "Beyond Consequences, Logic, and Control".  She recently wrote a new book called "Help for Billy". 

 

 

Help for Billy is a book about how to help children, who come from trauma, in the classroom.  Let me tell you....when I heard about this I was first in line to buy it.  As many of you know school has been a very hard struggle for Oksana.  Her behaviors there have put me through every emotion you can imagine.  We've tried every single behavior management technique out there with no success.  Reading this book has literally completely changed my perspective on and my understanding of her behaviors at school....and at home for that matter.  I am about 80% through the book and yesterday I saw the work that it is doing in my heart.  Yesterday afternoon Oksana's para shared with me an "episode" she had that morning when she discovered that her special ed teacher had a sub.  I'll just share that it wasn't pretty.  For the first time I didn't want to cry, I didn't get angry, I didn't plan a punishment as she was talking.  I just understood.  It all made so much sense.  The more I learn the more I understand how wrong I have handled her behaviors in the past (you can not parent these kids like kids who are raised in loving families).  And the more I learn the more I want to educate those around her.  After hearing the story, I asked her para if she would be willing to read a book.  I told her about this and she went home to immediately download it to her Kindle.  I plan to recommend it to her whole IEP team.  I know Oksana is not the only child in that school that would benefit from the teachers having a deeper knowledge of kids who come from trauma. 

 

Having said all of that, I am looking for a new psychiatrist for Oksana.  Let me start by saying that I have no doubt that Oksana needs medication.  No doubt at all.  However, when the only option EVER given to me to help her is to increase her meds or add new meds, I start to question.  When I ask a question and it isn't thoroughly answered...or even better it is answered with a different answer because she wasn't listening, I start to question.  When she tells me we need to use behavior management techniques and then gives me no resources, help, or recommendations, I start to question.  When I mention the name Heather Forbes and she has no idea who I am talking about I wonder how much work she has done with kids like Oksana, and I start to question.  I'm thankful that she got us on the road to healing but it's time to find someone who can take us beyond a chemical straight jacket and into some real healing for all of us.

 



Skweezrs

It's been awhile since I've blogged.  It's been a combination of being busy and having so much to blog about that I don't even know where to start.  I might do a couple of blogs today but to start I wanted to tell you about a company that I recently learned about.  I know that many of you who read this blog have children with special needs, so likely many of your kids have some sensory processing issues as my girls do (and acutally one of my boys too).  Skweezrs is a company that was started by a mom of 2 girls with autism.  She makes some really neat products out of lycra.  She found that finding sensory products for her girls was very expensive, so her goal is to make products at a reasonable price for families.  If you have done any research on how expensive these things can be I think you will agree that she has succeeded!  Here is a link to her etsy store:  http://www.etsy.com/shop/skweezrs?ref=seller_info

She makes sheets and here is the description from their etsy page:

“Skweezrs” sheets are great for those children who need to relax and calm down at bed time. These sheets are kid-friendly sheets in fun colors for all kids. They work especially well for kids with Autism, PDD, Aspergers, ADD/ADHD, and other neurological disorders.

Some of the therapeutic benefits of "Skweezrs" lycra sheets include spatial awareness and deep-pressure input. Some autistic children seek deep-pressure sensory stimulation and need that pressure to soothe an over-stimulated, disorganized nervous system. This therapeutic sheet can help to minimize such behavior and help your child relax faster.

Here are some pictures of the sheets as well as pictures showing them being put on a mattress:

They also sell body socks....here is the description of them from the etsy site and some pictures:

Skweezrs" are kid-friendly, fun, therapeutic socks made for any child with sensory issues. Autistic children love these socks. The body socks are made from four-way stretch Lycra®. This product is a batman sock without Velcro closure. If you want something other than what is listed please let us know.

Some of the therapeutic benefits of "Skweezrs" body socks include gross motor control, spatial awareness, and deep pressure input. Some autistic children seek deep pressure sensory stimulation. This therapy can help to minimize self-stimulating behavior (such as rocking, repetitive talking, or mouthing). It can also increase a child's ability to concentrate and organize, thereby allowing the child to respond more effectively to both academic and social stimuli. "Skweezers" are a perfect addition to any sensory diet

Finally, they also sell tubes for kids to crawl through.  They don't have them listed on their etsy store right now but I just contacted her and asked about them and she got me all set up.  Here are some pictures:

We ordered Oksana a sheet and a 6 1/2 foot tube for her birthday.  She is going to be THRILLED!  We also got Anya a sheet.  I'm anxious to see if they are helpful....I'm sure they will be.  I'll report back when I have them and have used them but I was so excited to find this company that I had to share!