Wednesday, August 27, 2014

Wordless Wednesday-08/27/2014

Wednesday, August 20, 2014

Wordless Wednesday 08/20/2014

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 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...

Monday, August 11, 2014

Summer break is over!!!

     Well, today was Kerstin's first day as a 7th grade student!  I am still in disbelief!  My daughter, my baby is in 7th grade and will be a teenager in December!

     Today was interesting.  I am amazed at how district leaders know how to avoid you when things aren't fully in place.  This is NOT the post for that and I will not "go there" now!  I hope they know IEP's were written at the end of the 2013-14 school year!

     Kerstin wanted to sleep in late!  Like always, I had the lights and TV on...nothing was working at first.  Eventually, we got the day started!  She was happy to see her teachers and the students, only for a while too.  She was ready to go.  I knew she couldn't stay long anyway because of the seating arrangements and her chair being a snug fit.  Hopefully the new wheels will be here soon. 

Here are some pictures from Kerstin's first day of school!  

All loaded up, ready to go!

"I'm ready to go home now!" 

More to come...

Tuesday, August 5, 2014

About Last Week

     Last Tuesday, Kerstin had another spinal fusion follow up appointment.  Everything went well, really well.  The fusion is going well. Kerstin is healing, the screws and rods are in place. There were a few questions for the doctor.  

     Lately, Kerstin has been drawing her left leg up excessively and it appears that stretch marks are coming because of the constant pull or bend.  She also hangs this left off the side of her wheelchair. Hanging leg off the chair is pretty much a comfort thing.  Since Kerstin is not a walker, her kneecaps are not in place as they would be had she been a walker.  Doctor Killian informed us that there has not been a successful surgery that would be worth performing to correct it.  

     The dysplasia of her right hip has not changed, there is no arthritis there or in her knees.  Always a good sign, and I'm very thankful for that.  Even better, he tells us that Kerstin is done with orthopedic surgeries!  He will continue to watch her hip, but as he stated "she's done with ortho stuff"!  That was great news because on July 23, 2013 at her follow up from the bilateral triple arthodesis (fun to say), we found out that the curve of her spine had increased to the point of needing surgery. This appointment, all great news!

    We are still waiting on the new wheels to come, should be approaching any day now.  She is snug as a bug in her current chair.  Kerstin's physical therapist sent a letter to the doctor requesting that Kerstin get a Hensinger neck support.  She's been tilting her head a great deal since the surgery.  Brenda (PT) said that when a child has scoliosis, they tend to tilt their heads to compensate for the leaning that is caused by the curve.  Once surgery is performed to correct the back, they still have the head tilt.  The neck support will help to strengthen muscles in her neck and hopefully, she will eventually hold her neck/head up better. 

Hensinger Neck Support

     We also got a prescription for a Tumble Form chair so that Kerstin can have another seating arrangement when she's at school, that's not in her wheelchair.   There was a beanbag that she had access to but, pettiness with/ from school leaders/administrators changed that.  The beanbag was flattened within weeks of the last school year starting.  Larger children that have mobility and limb usage had access to the bag and it became of no use for Kerstin in it's pancake like state.  She had a Tumble Form, but quickly outgrew it after the spinal fusion stretched her, no complaints there. 
Large Tumble Form

X-Large Tumble Form

Tumble Form chair with wheels.

     So, Kerstin will continue therapy! Follow up with orthopedic specialist only if/when needed until next scheduled appointment.  Lovely!!!

More to come...

Monday, August 4, 2014

Back To School. Dread or Celebrate?

     It is that time of year!  Tons of parents are celebrating everywhere!  It's almost Fall and that means the new clothes and supplies have been purchased, buses will be rolling soon and the bells will be sounded as the new school year commences.  Morning routines will or already have started.  Those routines include; getting everyone up and out of bed after months of sleeping in late.  Getting dressed and out the door.  Mad dashes for the car or bus.  Yeah, it's going to be interesting.

     Many parents are happy because their lovelies will be "out of their hair", so to speak, at least for a few hours per day.  They send them off with their backpacks, stocked with supplies and that is it, until there is a need for homework help.  If you are a parent like myself, raising a school aged child with special needs, the daily routine is a bit different!

     I'm not jumping for joy because it's time for back to school.  I won't be laying back in bed once the bus pulls off with Kerstin.  There is no complaining here.  Just education and hopefully an understanding!  Things are different in some households and families.  

     My words a few days ago on a Facebook post:  When prepping for back to school, some of us have to do more than clothes, pencils and paper, backpacks and lunchboxes.  We have to make sure seizure/epilepsy care plans are in place, medicine lists and schedules as well as g-tube feeding schedules are ready.  Not to mention the many letters and notes from doctors, therapists and specialists...and then the petty stuff.  It's almost that time!


     Kerstin has been in school since August 2006.  I have been her "right-hand Mom" since day one!  Everyday that she's been able to attend school, I have been there providing service and assistance to/for her.  These services weren't limited to only her.  I have assisted the instructors when needed and definitely Kerstin's classmates.  That is how it's supposed to be, right?  If you're in education, you're there for the children!

    In spite of the pettiness I've endured over the years just to ensure that my daughter receives an education with peers of her age and in her community, I still happily attend school with her.  I do whatever is necessary to ensure that she receives an education in as much of a "normal" way and that it happens in an environment that resembles her life and community.  Her life is not self-contained and neither will her education!!

     So, as the school year approaches, remember those among you that have to go the extra mile with there little ones in order to get them prepared for school.  We don't just send them to school, some have to go or be there more than most! 

More to come...