Parental Involvement

   In schools today, what do you think one of the things some school officials would say is missing?  Parental Involvement!  Why do you think that is the case?  It is almost guaranteed that you will hear similar reasons no matter what school or community.  Reasons like, "We just can't get our parents out to support the children"  "Our parents aren't interested in things like this" and many other reasons.  Parents even give reason for their lack of involvement.  "I have to work"  "The teachers (other school officials) don't listen", and so many other reasons.  

     What about the parents that are committed?  The parents that are willing to help whenever and however they are needed?  Some are often overlooked, viewed as an outcast or trouble maker.  That has been my personal experience!   

     Speaking of my experience(s).  Time and time again and day after day, when Kerstin has been well and able to go to school, I have and will continue to be at her side.  Yet, somehow, when this mom brings up accessibility, special education, ideas or suggestions, I am considered an enemy! 

     After all, shouldn't advocacy and parental involvement go hand in hand?  When there is parental involvement, the parent(S) are not only involved, they also advocate for their child and others.  They want what is best for the child's education.  They want to make certain that the child is in an environment that is conducive to learning.  They want to ensure that the educators are qualified and knowledgeable.

     Schools/officials should want parents to know what is going on in the schools as well as with the board/district, right?  Maybe not!  With this parental involvement, parents should be able to voice their opinions, not just hold classes, make copies and sign in to meetings so that the schools look better.  Parents be engaged!  Be involved.  When parental involvement is sought, be supportive of what you get and build a relationship!

     Parental involvement=Advocacy!

     


     

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...

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...

Unexpected Happenings...One Year Later!

Spring Break is here once again.  This year on the Monday of the break, we were at home.  No scheduled appointments to Children's Hospital to see a neurologist, or to have a swallow study done.  That's exactly what we were doing this day last year.  

March 25, 2013 a day/date I will not forget for a long time.  
That is the day I was told that it was no longer safe to feed my child the only way we had used for 11 years.  We could not leave the hospital.  I still cannot describe the shock, the hurt and the fear I felt that day.  That week she spent in Children's is chronicled here.  

Kerstin at Children's Hospital-Neurology--March 25, 2013

A year later, Kerstin's weight has doubled.  She has outgrown pretty much all of her clothes.  We are in a slow process of building a new wardrobe for her.

Kerstin-both taken March 28, 2013 

I will say this about our feeding tube journey;  I never thought that I would have to learn to feed my daughter via a g-tube.  I was always scared of them.  The unknown, the horror stories I had heard just had me completely afraid and unwilling to consider it until I had NO choice at all.  Now, my daughter is thriving!  As previously stated, her weight has doubled.  She is still easy to get sick with viruses and things from "germy" school, but not as often.  

Kerstin--taken March 11, 2014

I'm learning about the g-tube everyday, a year later.  I have become more comfortable with using it, just not changing it, I'll leave that to my sister for now.  As with everything, it is a learning process.  We are always growing and learning!!

More to come...