Not Our Friend!

   

     First, the story behind the Wordless Wednesday 11/05/2014 picture.  When we are home I usually sit on a stability ball to give Kerstin her boluses.  This smile happened when I was about to sit, the ball started to roll and I made a sound that apparently had her "tickled pink"!  What a smile?!?

      Now, I can think of a few people and things that fit the category; "Not Our Friend!"  When raising a child with "special needs" you encounter things along the way that just are not friendly or ideal.  When these happen, we push forward.  I am especially amazed by my daughter's strength and courage.  I often say that I wish I had just an ounce of it.  

     It was this time last November that we found out that Kerstin would not be going home after her spinal fusion as originally thought.  She hadn't been able to take a small amount of her bolus without abdominal distention, not just a little bit either. So, for that unexpected illness, Pancreatitis comes to mind a year later.  Definitely not our friend!  She was diagnosed until a few days and many tests later but, she had it.  My child had been diagnosed with something the doctors and nurses said is rarely seen in children.  

Spinal Fusion had gone well.  She was dealing with something else.  Receiving TPN and Lipids for almost 3 weeks because of Pancreatitis.  It didn't steal her smile.

     Epilepsy/Seizures, I don't think I really need to explain why they are not our friend.  For me, as Kerstin's mom, they seem to come without warning.  I am very thankful for the Facebook pages that I have found.  They are filled with links and information on how seizures come on and what the person feels before, during and after and episode.  I've never had a seizure but, Kerstin has had quite a few.  They are hard to watch.  As a parent seeing your child seemingly looking at you but her eyes are so void it's like she is looking through you!  Not even a gentle rub can stop them.  They don't leave until they are ready or Diastat is administered.  Even then, as we saw earlier this year, did not immediately work.  Seizures can be vicious!

     Spasms and spasticity are not out friend either!  We have muscles all over our bodies, that means that spasms can happen anywhere.  Kerstin usually has spasms in her legs that causes her to at times violently kick.  At times, gently rubbing them can sooth her and others required a pain med to cease.  Spastic Quadriparesis is the medical terminology or diagnosis given as types of Cerebral Palsy. 

     Sleepless nights, are not our friend.  Kerstin goes through these phases of having very sleepless nights.  Some nights, she will wake up at midnight and not fall asleep until the next morning...6 a.m.  That isn't good for anyone. 

     Medicines that do not work and cause other issues, not our friend.  That recently happened with the scopolamine patch.  The first patch, used to help with drooling, was used September 6.  A few weeks in, I knew it didn't seem to be helping, I decided to give it until November 6.  Had to discontinue them as of November 3, causing a rash behind both her ears.        

Right ear

Left ear..upside down

     I could go on and on about the things that are "Not Our Friend", on this journey, I can only imagine there are plenty of things that aren't friendly, that require more energy than others.  As the saying goes, we have to "role with the punches".

More to come...Neurology appointment today.  Hopefully we will have an update on the recent seizure activity. 

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!

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...

Access for everyone!

     While working on a class assignment, I came across somewhat of a challenge for everyone.  I will include it later in the post.  This challenge made me think about what I have experienced in the past week.  After Kerstin's therapy appointment last week, I had to go to the Sears Repair store to pick up some things for the lawn mower.  This was my first time going to this location.  I must say it was an eye opening experience.

     The experience was so touching, I had to tweet Sears about it and I've sent an email to Americans with Disabilities Act (ADA) about this and the need for better changing tables/stations in public family restrooms.  We, my daughter, my 10 year old and 4 year old nieces pull into the parking lot.  There are faint lines for accessible parking, Great.  No one was unnecessarily parked there, even better!  The store has steps/stairs to the entrance door and NO ramped access!  NOT GOOD at all!  I had to leave my daughter and nieces in the vehicle, running so that they could have air.  I had to ask the 10 year to lock all the doors until I returned.

Access for everyone!

     A few days later, I mentioned the experience to my sister.  She said something so critical yet, something I know many people do each and everyday.  When you have the ability and use of all limbs and can climb stairs without incident you don't think of those among us who cannot do the same.  

     So, I will challenge you to try this.  I think it's worth it. I even posted it to Facebook/Growing With Kerstin. 

Worth the experiment! Please take notes and share if you don't mind.

Many of us take for granted our ability to come and go as we please. With the exception of a few buildings, which are off-limits to the general public, we are free to enter any building we wish, whenever
we wish. During the next week, keep track of the buildings you enter, the streets you cross, and the activities in which you participate.

* How accessible are these to persons who are in wheelchairs, blind, or hearing impaired?
* Are the room numbers in your building labeled in Braille?
* Are the steps ramped or is there an accessible lift or an elevator?
* What areas have not been made accessible to these individuals?
* How does accessibility limit their participation in the activities in which you regularly participate?
* How could these areas be made more accessible to individuals with disabilities?

Change the Changing Stations!

     You cannot count the times you've been out with your family whether, it was shopping, dining, appointments, entertainment or whatever, you've needed the restroom!  If you haven't that's a new one!  If you haven't it is a guarantee that your little one or the little ones you're traveling with have needed the restroom.  It is a part of life.  Whether it be a newborn or an elderly person...the restroom break is inevitable.  

     For many of us, we are raising children with special needs.  Those needs include having to be changed!  This is NO easy feat when the person needing to be changed is well over the height and weight limit of the very popular "Koala Kare" changing stations that are readily available in almost every restroom I've been in.  You've seen them.

AMC Theaters-Montgomery, AL

Therapy

     There in-lies the problem, the big issue!  Babies and infants are NOT the only people in our society that needs the changing stations or access to a public restroom.  We have preteens, teens and even adults that cannot go into the restrooms and use the toilets or the urinals, my preteen included!  

     I wish you could see the acrobatics I perform when I am in the restroom changing a 75 lbs/ 4 feet whatever inch on a changing station that is only designed for a baby.  I'm usually standing on one leg because my knee is under the station for extra support!  I'm leaning to her chair for her toiletries at the same time keeping a hand on her so that she doesn't come off the side!!! Some of they are higher than others making the process even more challenging!

     I know that something better can be done!!  We have so many family restrooms now.  They too, are available almost everywhere I've gone lately.  I know an adult size station can at least be placed in those restrooms!  Our families deserve that and the privacy!

  

Changing area at Children's Rehabilitation-Montgomery, AL

CRS-Montgomery, AL

     I know a simple table or cushioned bench is not hard to place in restroom and place a simple accessible sign above it is not expensive!  Next stop, Americans With Disabilities Act (ADA).

More to come...

No Parking!!!

     How many times have you gone to Walmart, the mall, the movies or even your child's school and someone was parked in accessible parking and you felt they shouldn't park there?  It has been too many times to count for us!  Feelings and counts aside...they have no tag or placard acknowledging the need to use accessible parking.  Let's keep in mind, not all disabilities are visible!  The person may have asthma or COPD, Epilepsy or some other type of medical need that causes them to need to park close to where they are going. 

     We also need to "keep it real" and be honest!  People are abusing the tags, the placards and overly abusing accessible parking.  It is NOT convenience parking!  That parking is there, close to the buildings and spacious enough for individuals and families that really need them.  We have people and wheelchairs to unload and it CANNOT be done so easy in the usual aisle parking. 

     I know that every single time I have gone to Walmart, I am guaranteed to see people pulling up withe placards swinging from the rear-view mirror, when they clearly state to remove before driving. 











 The part that really bugs me is when there is a vehicle parked on the striped lines in accessible! 

That is very inconsiderate when, like I stated earlier, families are unloading people and wheelchairs.  People are parking in ramp vans which need the extra space, 8 feet is printed on most vehicles with ramps! 

     Vistaprint just might be getting business!  Whenever I see a vehicle parked on the lines, they will come out and see something similar to one of the pictures and a little message saying "Think before you park!"

Be mindful, the spaces are not a luxury!  They are a necessity!  
     

A Little Determination...

These pictures are the proof that a little advocacy and determination goes a really long way!!!

It is also a reminder to MYSELF to never give up, stay visible, vocal and focused!  I am an advocate for my child and others living with disabilities!

April 27, 2013

March 18, 2014

Comparative photo

More to come...

Vote for Kerstin Sanders - Hayneville, AL in the 2014 National Mobility Awareness Month Local Hero contest!

HEY GUYS...if you in the orange box before you submit your vote, please click on the "Get an extra vote" button, answer a simple question, usually caregiver/accessibility related...your vote will count as TWO....THANK YOU!!! Vote daily and share often!!!!

THANK YOU FOR YOUR SUPPORT!!!

Vote for Kerstin Sanders - Hayneville, AL in the 2014 National Mobility Awareness Month Local Hero contest!


 

Changes

     I know it has been a while now, since I've posted any updates.  I've been so very busy, so much has taken place.  Kerstin has started middle school!! I still can not believe it.  We are also much closer to Kerstin's last day of school before her surgery.  Now, to get caught up on things, I will back up to August 19, 2013, the first day of school.

     Nothing much has taken place since I visited the school for her IEP meeting back in the Spring.  I never got a response to my email back in January about my concerns for accessibility issues at the school either.  The email was addressed to the special ed coordinator, the human resources manager, Kerstin's former school's principal and the superintendent.  Odd group of recipients to talk about school accessibility, I  know, but I was originally called into a meeting with the coordinator and HR, about ME and not about Kerstin and definitely not about placement.  I later emailed this group to address them calling me to a meeting with two people originally and I got blindsided and the meeting was with four, and my employment was the least talked about.  Long story short, no one responded to my email from January 23, 2013 until September 12, 2013!  Great communication, I know!

     First day of school.  I discover there is NO accessible parking at the new school, no signs saying that an accessible entrance is here,  the bumpy, extremely broken sidewalk has not been fixed and this former "science lab" in which Kerstin has to travel through several times a day is still a cluttered, smelly mess!! The only progress,  a cement ramp has been installed, just outside the cafeteria.  Gee, thanks!  I guess my dauhgter was really expected to stay in this "self-contained" classroom, secluded from her peers and the rest of the school?!  No thanks!  No one else notices this, no other parent has a problem with this?  No school board big wigs will address my email from January?  What's going to be done about this?  The following letter sent to the editor of the local paper:

The Forgotten Student(s)

            Dear Editor:

I am the proud parent of Kerstin, a determined eleven year old who loves attending school with the friends she has known since Head Start. Kerstin was diagnosed with Cerebral Palsy at six months of age. She has since been diagnosed with Scoliosis and Epilepsy. As her mother, I am steadfast in my belief that children with Special Needs should not be cast away like an eye sore or an embarrassment. In 2005, I quit my job as a Student Enrollment Specialist at the Montgomery Job Corps Center so that I could attend school with my daughter. Yes, since Kerstin was in Head Start, I have gone to school with her every day! We have had many trials along the way. We have encountered some very willing teachers and administrators and some very unwilling ones as well. Her classmates have proven to be the most helpful. I believe that the willingness and understanding exhibited by her classmates is the result of Kerstin being included in general education settings.

Kerstin’s transition to middle school is presenting a number of challenges, though. Kerstin is very observant and immediately noticed the differences in her environment at Hayneville Middle as compared to Jackson-Steele. Getting to the self-contained classroom where Kerstin receives one-on-one services is a concern. The classroom is not only in a basement-like area of the school, but also at the back of the building. Kerstin has to literally circle the building in order to gain access to the main floor of the school where she has a number of classes. The sidewalk is so bumpy and in need repair that it is difficult to navigate in her wheelchair. When she becomes discouraged, I try to make her smile by singing an old R&B song, “Bump, Bump, Bump”.  I try to not become discouraged myself. If it rains, unlike her peers without a disability, Kerstin has no way to get to the main floor as the sidewalk is not covered. Her peers can take the stairs inside the school and Kerstin is literally left outside in the rain. Also, there are no wheelchair accessible parking spaces at Hayneville Middle School.

The Individuals with Disabilities Education Act (IDEA) includes two fundamental requirements for children with disabilities: the child will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE). For me, that means that Kerstin has a right to attend school in a setting with her peers who do not have disabilities. It is my opinion that a child with a disability should have social interactions with their peers regardless of ability.  And as mandated by the American with Disabilities Act (ADA), she should have wheelchair accessible parking and wheelchair accessible entrances to the building. According to Advocacy for Inclusion, Inc., an inclusive educational environment builds confidence and self-esteem for children with disabilities while giving the child with a disability a sense of belonging and achievement.  Furthermore, inclusive education promotes social growth, awareness and acceptance for all members of the community. Children without disabilities become more aware and most of all, more respectful of the challenges that persons with disabilities face.  Inclusiveness promotes the fact that people are people regardless of ability.

Our transition to middle school, while challenging, is also coincidentally occurring during a pivotal time in our country’s history—the 50^th anniversary of many of the historic moments of the Civil Rights Movement. Fifty years ago, America witnessed some to the most crucial demonstrations in the fight for human dignity—the Birmingham Children’s Crusade, George Wallace’s Stand in the Schoolhouse Door, and the March on Washington to name a few. I have committed my life to fighting for my daughters human and civil rights even if it means that I have to fight a modern day George Wallace or Bull Connor who presents him/herself in the form of a teacher, administrator, or superintendent. I refuse to let anyone “stand in the schoolhouse door” and block her access to the education she so rightly deserves. I will ensure that my child “receives the best education possible” and that she becomes a “responsible citizen, effective communicator, life-long learner, and “fierce competitor on the economic world stage”? I WILL speak up! I am my child’s voice!  She will NOT be The Forgotten Student!

Respectfully submitted by:

Mattisa Moorer

Parent of Kerstin Sanders

Lowndes County Public School student

Italicized taken from Lowndes County Public Schools Mission Statement

September  2013

   
     Did not think I would have to take these measures.  I hope all parents of children with special needs will realize that there are other steps available for you.  You have rights, Know them!  You have a voice,  Speak up!  Needless to say, contacting the newspaper, has gotten the ball rolling on things that should have been done years ago, and NOT just for Kerstin.  It should be done for all students and others with accessibility needs!  I will never give up, I'm an advocate for life!

     The newspaper articles are here and the first one here (scroll all the way to the bottom). 

Some progress made, still so much to come!

Before:

After some work...

So, in the midst of preparing, mentally, for my daughter's surgery, I HAVE to be a voice, can't sit idly by and let this continue to go on!  You know there's more to come...