Advocacy for students with disabilities....

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Added: Wed Sep 17th 8:54pm
Posted in: Disabilities

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Hi All – I belong to an on-line support group for patients with Charcot Marie Tooth Disease. (CMT)

 

With each posting by a parent whose child has had to endure unprofessional, unpleasant, uncooperative, unresponsive behavior from the educational system in our country I become more and more frustrated.  It doesn’t matter where we live; our CMT children pose a unique challenge to the schools in all 50 states.

 

We are at the point, in my opinion, where we need to band together and become one voice.  I am speaking off the top of my head right now, but there is obviously a growing need for us to stand in unison and get the attention of our elected officials and start making tsunami- sized waves regarding accommodations, IEP’s and least restrictive environments.  We need to come up with a buzz word that applies to our children and their struggles.  We need to develop a system of real checks and balances that insures the IEP’s are being followed to the letter.

 

In a world where parents can fight for their children’s right not to be given too much homework, not to have to take a class because they don’t care for the teacher, not to have to sit next to a particular student and then threaten the school with litigation if they don’t get their way – it is time to get on the record and start complaining about the REALITY that our children are dealing with and will continue to face until the system is fixed.

 

Here is a perfect example of what I mean:

 

My husband and I attended an IEP meeting at our sons’ high school the week before school started.  Every teacher was in attendance.  The principal had provided all of them with printouts describing CMT and its manifestations.  They also received the article that Andrew wrote for the HNF describing what it’s like to be a kid living with CMT.  We told each and every teacher about the physical limitations he has in using pens/pencils, scissors, graphing, writing mathematical and scientific equations etc.   They all guaranteed us that he would be provided with a laptop to use for class assignments; that they would look into software for math and science assistance and that alternate assignments or pre-cut items would be provided for him to participate in such projects.

 

 Andrew missed a few days of school due to tendonitis in the leg that just came out of the cast.  When he returned to school he approached one teacher about make up assignments and in front of the class she told him that she was very concerned that he would never make it out of 9^th grade with so many absences and had he considered doing the hospital homebound program permanently for high school?  He was devastated and I was furious!  Needless to say I was on the phone to the principal in a flash and she assured me she would get to the bottom of it.  Turns out that the same teacher complained to his guidance counselor that he wasn’t doing the assignments in class that required the use of scissors and that he wasn’t doing written work either.  She had told the class that they were not allowed to use their laptops for this work and failed to produce pre-cut items.  Hello…is anybody home?  The principal has assured us that it should not happen again.

 

 

The school nurse harrumphs every time he puts his wheelchair away at the end of the day.  He missed the bus because kids don’t get out of the way of the chair.  The bus driver didn’t want to wait.  The school is 40 minutes away.  Andrew waited in 95 degree heat for me to get there.

 

Our kids don’t get picked first for sports, if they are still allowed to play them.  People stare at them when they walk.  Folks don’t understand them when they speak and are tired.  Teachers get annoyed if they nod off in class, or take too long to go to and from the restroom.  Cafeteria trays can be heavy and awkward, not to mention having to stand in the long line to be served.  Using a fork and knife can be a struggle. It’s embarrassing not be able to open up bags of chips or containers of applesauce. Opening backpacks and carrying books can be painful.  The list is endless depending on the severity of the child’s CMT.  The most hurtful, however, is when teachers and staff members don’t take these things into consideration and ignore the IEP, the pleas of concerned parents and the students themselves when they attempt to self-advocate.

 

Our kids do need to do as much as they can to keep themselves as healthy as they can be. I know we can’t protect them from the world of idiots out there who can’t understand that someone can look perfectly healthy and yet not be.  We can teach them to self-advocate and to try to ignore the hurtful stares and comments of others. 

 

Our biggest challenge, however, is to insist, no, demand that our educational system, teachers and staff be better trained in assisting students with varying exceptionalities. There has to be a better method developed to protect our CMT kids and allow them to receive an excellent education in the process.  We shouldn't have to work this hard to get our kids what they should already have in the greatest country on earth.

 

So, how do we go about this?  Do we start in one county?  Do we start with a congressman, a senator? There’s got to be something we can do together to start larger advocacy programs for our children and grandchildren. Perhaps there are some retired educators amongst our boomer members who could shed some light.

 

I know this was long…but hopefully I have piqued someone’s interest or gotten others to think about where we go from here.