About the Author

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Plainville, CT, United States
Having achieved my goal of becoming a published author, I contribute it to the fact that I have been writing since the age of 9. My boys were the inspiration for my children's stories and my life is the inspiration for my autobiography. I have a tendency to write about whatever I feel, relevant, interesting or not. I welcome any comments you may have, positive or constructive. Thank you so much for visiting and following my blog, My life.

Thursday, June 14, 2012

Society vs. ASD - Ignorance at its Best - Part II

So now the battle begins.  At this point, Erik was in 9th grade.  TEN years after the normal age of diagnosis for Aspergers.  I had a lot on my plate to deal with and had to prove people wrong that were supposed to be knowledgeable.  People that were supposed to provide for my special needs son when he stepped through the school doors, but were in fact trying desperately to prove that they didn't have any obligation to provide for him.  With so many years of being told by school officials that Erik was too "normal" for Aspergers, now I had the documented proof that they were wrong.  I was not well liked to begin with because I fought for my child, made them listen to me and I didn't take no for an answer.  I called IEP meetings out of the blue if I felt that Erik was being treated unfairly, that his needs were not being met, if his academics were poor (i.e. grades) amongst others. I had to be Erik's best advocate because no one else was going to be. I knew that the next thing I had to do was going to be difficult.

I gathered up what information I could, wrote up a summary of a plan that I wanted to see put in place for Erik and called an IEP meeting.  As I thought I would be, I was met with resistance, reasoning was demanded of me, but I finally got a date without having to go into too much detail.  The element of surprise was going to be my ally, but I needed some help to pull it off.

Now you need to know something about me.  I don't get upset easily, but when I do, I get very, very upset.  When I say upset, I mean angry.  I cry when I am angry.  I don't know why, I always have.  I also get extremely hot headed.  I knew that this could be my downfall so I wanted to be sure that I had someone there with me that could keep my emotions in check. I was basically alone in this as I was divorced and Erik's father was useless when it came to this kind of stuff.  I recently remarried but with Bill not being Erik's father, I didn't want to burden him with this. My family was all out of state so bringing one of them was just not an option so I did what I THOUGHT was the next best thing.  I brought a "professional" advocate with me. Oh I sat on my computer and googled advocates for hours.  I finally found one that was well known, had many years of experience and specialized in advocating for children with disabilities. Not knowing that there was FREE service available to me that provided advocates, I ended up paying this woman 100.00 an hour for her services.

Jean was well known within the Plainville school district and I was about to find that out.  When we entered the conference room at the high school, jaws dropped and Jean very calmly said hello to each member of the team, calling them all by name. Nice. I had a feeling that this wasn't going to go as bad as I thought it was. I was questioned by the Special Education director as to why I felt it was necessary to bring an advocate with me as she explained that they were doing everything they could to work with me and make sure that Erik received proper services.  With a simple "now is not the time, your question will be answered shortly", we began the meeting.  After several "I don't know why you called this meeting, we are helping Erik's needs get met, we are following his plan, in addition to other statements, I presented them with "I called this meeting because I have taken it upon myself to bring Erik to an outside Psychiatrist to have him evaluated.  As you are all aware, I have mentioned several times over the years that he be evaluated and tested for Autism.  Because he was normal as far as you were concerned, you dismissed my request stating that I didn't have all the facts.  Well now I do.  Erik was formally diagnosed with Autism.  Aspergers Disorder specifically, as well as PDD-NOS.(Pervasive Developmental Disorder not otherwise specified) Now a new plan will be put into place for him that will include services appropriate for Aspergers."  Talk about jaws dropping.  I felt very proud at that point.  I knew that (for lack of a better phrase) I had them by the balls now.  Game on, ball in my court.

At first not much was said.  Oh we went round and round about what services I "felt" he needed, what the district felt they were and were not responsible for providing (i.e. pretty much everything that was not academically related from their stand point) and what I wanted out of this. I was fully prepared with an outline of a program with him, services that need to be provided to my son that the district is responsible for providing (per CT State law) and how I would like them implemented.  I got a firm "we aren't going to do this".  My reply to that was "And now the answer to your question Ms. Schiffer.  THIS is why I felt it necessary to bring an advocate."  I'm not going to go into full detail about the meeting. All I am going to say in summary is that Jean took over at that point, we made some concessions and modifications to the outlined plan that I provided and in the end, it was implemented into this IEP.  Going into further detail about the meeting really isn't necessary to get my point across.  I just wanted to add enough detail to show you that even though you are fully prepared and know specifically that State law governs what services the district has to provide, you are still going to get resistance from those in upper management/positions because now they know that they have to spend money.  It isn't about the kids any more.  It's not about what is best for them, it is clearly what is best for the budget.

These types of IEP meetings went on for the next three years with Erik. Some services were provided, others were not.  We went back and forth with his program, omitting one, adding another. With the late diagnosis, we really had a hard time finding a plan that would work as quickly as we needed it to.  The district was grasping at straws, trying to comply as they were legally obligated to, but also trying to spend as little money as possible.  I don't think that the team ever fully understood Aspergers.  I printed out as much material as I could to help them, but I think they saw it in a negative way.  AI's have a primary area of focus that they excel in.  Erik's is computers and electronics.  He loves to write (just like his mom!) so instead of using this as encouragement, if he did something that got him an in school suspension or detention, they took away his computer privileges for months at a time thinking that they would get through to him that way.  Despite my urging and prompting to use the computer as a reward, implementing the computer into his academics (i.e. writing assignments to be done on the computer, a PDA to be used for his schedule and homework assignments etc. I was given an explanation that a PDA is not allowed because it is an electronic device.  Personal devices are not allowed in school. Under the CT Special Education Laws, If an electronic device is necessary due to a disability, it is allowed in school.   Why is it that I know this, but school officials, that are heads of the Special Education Department do not?  It was beginning to become clear to me.  Despite the claim of knowledge of Autism, the claim of being "certified" to work with children that were on the spectrum, I realized that I was clearly dealing with ignorant people and it didn't seem as though it was going to change any time soon.




2 comments:

  1. Excellent Mel!! Lot of research and determination paid off!!!!!

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  2. 30 years ago! my daughter and I were having a similar experience. In Montessori pre-school, the teacher was concerned that she was having a particular difficulty in learning words and sounds. In first grade, the teacher again expressed concern about the difficulties Laura was having learning to read and suggested I have her tested. Now this was in 1979. Thus began OUR long struggle with the education system.
    IEPs, modified teaching plan (that were a joke), advocates (a lawyer friend who also had a daughter with LD), Special Education classes (also a joke) and on and on. Now at 38, she has her own upscale nail salon, (finally) a great husband and three beautiful children.
    I recall reading a little pamphlet that talked about
    "naming the dragon" - that in order to kill or fight the "dragon" you must first give it a name (proper diagnosis). I think this has been republished in 1995 as "Taming the Dragon"
    It was difficult time for both of us and left lasting scars. The ignorance and resistance of the educational system was unbelievable. Looks like it hasn't improved even though the dragons have different names.

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