Tuesday, September 2, 2014

"The newsletters came in today!!"

     That was the title of an email I received from our parent consultant on last Monday!  This is the same lady that called me earlier this year and told me that I needed to write an article for the CRS Parent Connection newsletter.  At first I had told her that I wouldn't know what to write, she informed me that she had been reading this very blog!  I couldn't deny that I was in fact, attempting to write!

     Took me a few days, wondering what to write about.  I thought about the audience...Parents, like me, dealing with similar issues, raising our children while trying to maintain our own personal lives and our sanity!  What did I want these parent to hear from someone that may be on a comparable journey?  I thought about Kerstin and how she has and still endures so much on a daily basis.  I knew that there were parents out there that would see this newsletter and they know that their child is loved and gives them the strength they need!

     "You make it look easy!"  That title came to me and I knew I had to go with it.  I have been told countless times, that I make things look easy when it comes to caring for Kerstin.  It only seems that way because I have to do them.  I have to care for her.  I have to be her voice, her legs, her caretaker, her comforter but most importantly, I have to be her sometimes sane MOM.

     I hope to submit another article sometime in the future.  That one was written as encouragement to other parents and to push myself out of a comfort zone.  I am published in a paper that will be read read by parents across the state of Alabama and possibly beyond.  We are on a journey, growing each day, hence, "Growing With Kerstin".  



     If you want a copy of this newsletter, please inbox me on Facebook-Growing With Kerstin.  To get future copies please send your name and address to:

Susan Colburn
Children's Rehabilitation Services
602 S. Lawrence St.
Montgomery, AL 36104
     


Monday, September 1, 2014

Have a safe Labor Day!







Tuesday, August 19, 2014

Wheelchair For A Day!!

     You know when something is constantly on your mind, you have to get it out there, so to speak.  Getting it out there can be talking about it, writing about it...whatever, however.  As long as it is o-u-t!  I made another Facebook post about the fact that Kerstin is at school, in an already snugly fit wheelchair, yet there is no another way for her to sit that is supportive.  


Very similar to Kerstin's chair!

     The beanbag she used for years before moving on to middle school is now flattened.  We were told by the special ed coordinator that "if it was purchased with special education funds, it can be used by any student".  Kerstin being the only user of that beanbag was NOT a problem until I went to the newspaper on the horrible accessible issues at the school.  Never-mind the fact that Kerstin and one other child were the only ones in wheelchairs.  He wasn't in attendance much this past school year.  Nonetheless, I was able to borrow a Tumble Form chair from CRS.  Kerstin used that chair until she went home on medical leave, prior to her spinal fusion.   





    After surgery, Kerstin had extra inches and pounds on her and quickly outgrew the borrowed chair!!  We've been seeking funding and sources for a chair that is big enough for her now.  It's coming soon, like the newly ordered wheelchair, they take a little time.  

     The back-story came to say once again...if these school leaders were in or had to be in wheelchair all the time...how would they handle things?  No other seating option.  No way to get out of the chair unless she is being changed!  NO, Kerstin will NOT be in attendance for the entire school day without another way to sit!  You know once I said that, letters are needed!  I already saw that one coming!  
Therapy/changing table.  Can't sit here unsupported!


     Kerstin's ortho specialist said something that I will not forget.  At her appointment last month when we were talking about school and seating, he said "It seems like so many people in our schools have lost all common sense."  That was powerful!  I haven't been seeing much common sense lately.  The people within her school system that seem to have it are often treated badly, and please don't form a decorum with Kerstin's mom.  Some have questioned how one could be nice to me after my going to the media.  Makes me laugh!  

     "Wheelchair For A Day!"  I would be willing to do the leg work to find chairs for a day.  Would the superintendent, special education coordinator, all central office administrators, and every board member be willing participants in "Wheelchair For A Day?  Our friends in the media will also be invited!


Inclusion!  That means,  YOU try a Wheelchair For A Day.  Share your experiences!


Thursday, August 14, 2014

What is Self-Contained? How would you handle it?

     I often wonder how many parents actually give that a thought.  How many whose child(ren) have special educational or healthcare needs actually know what a "self-contained" classroom is all about.  Oftentimes, these classes are called "special classes", the "special ed[ucation] class".  At the same time they are looked upon negatively. 

     In my research and coursework, I recently read something that made me think about Kerstin's school.  "Many of the students who were in special education were often isolated in the least desirable locations within the schools" (Losen and Orfield, 2002).  Previous posts and letters submitted to the local paper can attest to this being a sad reality in my daughter's school. 

     Special education classrooms or the self-contained classrooms are defined as: 

 Self contained classrooms are classrooms specifically designated for children with disabilities. Self contained programs are usually indicated for children with more serious disabilities who may not be able to participate in general education programs at all. These disabilities include autism, emotional disturbances, severe intellectual disabilities, multiple handicaps and children with serious or fragile medical conditions.


These classrooms are NOT designated to be an afterthought, a catch all storage area, a place to put students because they have behavioral issues.  There are areas for all of those.  They are called an actual part of the school environment, a storage closet and the behavioral management classroom.  If that type of class is not available, maybe one should be invested in.  


     While wondering what other parents knew and thought of the self-contained classrooms, I also wondered what would happen if others, particularly the decision-makers had to spend a day in these classroom that are placed in the "less desirable parts of the schools?  Can you imagine that?  I cannot count the times I've pictured the special education coordinator especially and maybe even other school board and leaders, having to use a wheelchair and not being able to get out of the chair unless it was the for purpose of using the restroom.  How would you handle it?

     How would you handle an entire school day in a wheelchair with no other seating option in the "self-contained" classroom?  Bean bag flattened and no longer supportive for a child with little to no trunk control.  How would you handle being segregated from your peers and not interacting with others that do not have a disability or special educational need?  

     I don't think that would be a comfortable feeling!  I'll say it again, my daughter does NOT live a self-contained life and she will not attend school and on a daily basis be expected to do so there.  

     Please do not misunderstand me on this.  The classrooms are needed!  They need to be an environment that is conducive to learning and tailored to assist with the needs of the students that they are there for.  Not an afterthought!


More to come...