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.

Wednesday, June 6, 2012

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

Autism. That word can send shivers down the spine of steel.  But what is it really?  You know, with all the research and development, theories and probabilities, I don't think anyone really knows. Sure they can all speculate but do they really know what Autism is?
Now excuse me if I am not politically correct on a lot of terms, I am not an expert.  I am just a mom. And my son has Autism.
The general consensus on Autism is that the child or individual cannot function in society, can not speak, is disruptive and cannot process the simplest of things. This strikes fear in  many people. All that they see is someone that is different.  They do not see the extraordinary person that is inside. They do not know that loving individual who does not have the capacity to hate.  They do not know that generally intelligent individual who, if for lack of a better term, has a brain that has a short circuit somewhere and is in need of a software upgrade.  An upgrade that has yet to be written.  
Many people do not realize that autistic individuals are intelligent.  Those individuals that appear to "not be able to process anything" are in fact processing everything.  They lack the ability to separate and block out that which is not important or significant at the moment. Put yourself in their shoes.  You are at work in a busy office. You hear all the phones that are ringing, you hear each individual having a conversation on their phone, you hear the clicking of pens, the sipping of coffee, the voices of co-workers walking by, staplers stapling, etc. all simultaneously. YOU CANT MAKE IT STOP!  You cant sort everything out and you can't find your voice in all that jumble.  All you can do is blurt out a word or two, a noise here and there to express yourself.  You want to tell someone that you love them but all you can manage is a verbal blurb. Its not an easy life for AI's (Autistic Individuals),  But because we don't understand them, we shun them because they seem "different".
That's the extreme level on the Autism Spectrum.
Over the years there have been many diagnosis of different levels of functioning with Autism.  So now the diagnosis is not "Autism" but "Autism Spectrum Disorder" or ASD.  Different levels of functioning.  We go from low functioning, such as an extreme case of Autism to the high functioning Aspergers Syndrome/Disorder.  These AI's, seem normal in all aspects of their functioning.  They just get labeled as lazy, sloppy, stinky, dumb, weird and dopey. Enter Erik.  My son.
Most children are diagnosed with Autism when they are young.  Around 4 or 5 years of age.  Instead, Erik was diagnosed as psychotic, delusional, bipolar, and oh yes. Lets not forget the universal "we really don't know what is wrong" diagnosis.....ADD.  Keep in mind that Autism was not amongst the realm of possibilities because Erik was a normal kid.  He wasn't stupid. He had a high IQ. He had an extensive vocabulary.  He didn't have outbursts for what seemed like no apparent reason.  He could function.  So we just go with whatever we can find that might fit the symptoms at the time.  
To make a long story short, Erik did not receive the correct services when he was going through school.  I brought up Aspergers time and time again but the district stood their ground. He didn't have autism.  He was normal.  
Finally, after gathering enough information, I took him to a private psychiatrist.  He interviewed Erik and myself individually, then together.  I took a test, filled in some bubbles.  He gave Erik some tests.  Guess what the diagnosis was?  Aspergers Syndrome/Disorder. Along with PDD.  FINALLY the diagnosis that would help my son. But did it come too late? 
For Erik, implementing services when he was in high school was going to be tricky.  I knew I had a lengthy battle on my hands and I also knew that I wasn't going to be able to fight this battle on my own.........