The Game Of Puppets
Chapter 8: of a multidimensional test, a startling discovery, and a reintroduction
A Game Of Puppets Fact #15: A charter school in the Kingdom of Del has academic performance goals as determined by state and federal criteria. When a certain percentage of students falls below a certain benchmark in the state standardized tests, the school will not meet that academic performance. In the 2012-2013 school year, 12 out of the 21 charter schools in the Kingdom of Del were below that benchmark, including that charter school in the County of Kent.
A Game Of Puppets Fact #16: For the 2012-2013 school year, every single school in the Kingdom of Del signed up to get Race To The Top Funding.
A couple days after his grandmother’s funeral, Jon was back in school. There were only a few days left of school, and Jon was ready to put an end to third grade and get summer started. His parents were also done with the school. They needed the almost three month break to get their own minds cleared of the craziness that had occurred that year. But before that was to happen, there was a final 504 meeting that had to take place. Present at the meeting were Lady Kathryn, Miss Summertop, Miss Diagnosis, Miss Short, Miss Storm, Jon’s father, and Miss Nada (his upcoming 4th grade teacher).
Miss Diagnosis went over the results of the Functional Behavioral Analysis. She used an evaluation called a Behavior Assessment System For Children 2. With this, there were five people that rated a series of comments, behaviors or actions that dealt with Jon in the classroom and at school. The ones who did ratings were Miss Summertop, Miss Toms, Jon’s father, Jon’s mother, and Jon himself. The results were mixed between the five of them. Oddly enough, Jon’s father and Miss Summertop agreed on a great deal of the ratings. Not surprising was that Miss Summertop and Miss Toms had vastly different ratings. Jon’s father had always noted the difference between chaos and order in the two different classrooms. The ratings covered areas like hyperactivity, aggression, conduct problems, anxiety, depression, somatization, attention, learning problems, atypical behaviors, withdrawal, adaptability, social skills, leadership, study skills, activities of daily living and functional communication. Based on the ratings averaged for all but Jon, it was determined that Jon was on the borderline of at-risk or clinically significant.
For Jon’s self-test, he rated himself to be at-risk. Of course this wasn’t communicated to him, but Jon’s parents knew that his self-esteem was very low. Miss Diagnosis also observed Jon one morning a couple weeks prior to the 504 meeting, and she saw a child who couldn’t focus half the time. He would spin around in his swivel chair, bite his nails, talk to friends and draw. Based on her report, Miss Diagnosis recommended the 504 team focus on classwork compliance, transitions, attention sustainability, and inhibiting impulsivity.
While there was a lot of discussion and notes to support those functions, the 504 was not drastically changed. Many members of the team wanted to revisit the plan the next September to see what was working. One recurring theme was how Jon needed to take responsibility for his actions. Many felt Jon should use a timer he would set himself to complete assignments. Jon’s father explained eventual therapy would be good for Jon, but it was very hard to find a good counselor in the County of Kent. Miss Summertop brought up her concern about Jon fleeing when faced with a conflict. Jon’s father brought up recess and how Jon needs to be closely watched. These were all statements in the notes, but most of the concerns were tabled until the next school year. So after all was said and done, the new accommodations were the following: use timer to complete assignments, ask Jon to repeat back directions, for any reading time a goal was added for Jon to complete reading and writing assignments, have Jon help to create his own choices or roles for task completion, and for field trips or unusual changes in routine outside of school one of Jon’s parents would attend that event. The last was under the “area of difficulty” of Jon running away when upset or going out of the classroom without permission. The person responsible for that was the parent on the 504 plan. There were no notes from anyone on the team about what they could do to help stop that. In fact, no behavior intervention plan was developed at all.
The school year ended, not with a bang, but a whimper. The Summertop era was over for Jon. Jon’s father didn’t hold Miss Summertop directly responsible for what happened with Jon the past two years. There were several factors at play. She was a brand new teacher that didn’t have a great deal of experience with children that had special needs in the classroom. This can be overwhelming for a teacher with years of experience, let alone a new one. Jon’s father assumed she wasn’t given a lot of professional development tools to deal with Jon’s situation either. Lady Kathryn, Lady Ellen or Lady Blue could have easily given her more training on special needs children. Miss Short didn’t seem to be proactive in following up on Jon’s accommodations with Miss Summertop. To Jon’s father, it seemed like there wasn’t a proper flow of information between different areas of the school.
During the summer, Jon was able to decompress again. He and his father would go on day trips, or go to the movies. Unfortunately, it rained a lot that summer, so many activities were curtailed due to that. Jon did go to summer camp twice a week at his church, and he always had fun there.
Over the summer, both of Jon’s parents really delved into Tourette’s Syndrome and it’s comorbidities. At the very beginning of the next school year, they had an evaluation scheduled with a great children’s hospital in the northern part of the Kingdom of Del. During this time of research, Jon’s mother found out something again that would change Jon’s future. While reviewing again what qualifies someone for an Individualized Education Plan (IEP), she discovered that Tourette’s Syndrome was covered under “other health impairments”. The United States Department of Education specifically mentions Tourette’s Syndrome in their reasoning behind having an other health impairment qualification. As per the U.S. website, the federal government states: “we do believe that Tourette syndrome is commonly misunderstood to be a behavioral or emotional condition, rather than a neurological condition. Therefore, including Tourette syndrome in the definition of other health impairment may help correct the misperception of Tourette syndrome as a behavioral or conduct disorder and prevent the misdiagnosis of their needs.” Jon’s parents wondered why the school wouldn’t have known that. How could Jon be denied an IEP if he clearly qualified based on everything they had found out? Jon’s mother also found out that the law stipulated that the chronic condition would have to adversely affect a child’s educational performance. This was Jon in a nutshell! The school could not use just grades and IQ tests to determine Jon’s eligibility, they had to factor in how his disability would affect his educational outcome.
Jon’s parents started researching the Tourette’s Syndrome Association, and ordered videos. For Jon’s father, reading something was one thing, but actually seeing videos of children having the same problems as Jon brought tears to his eyes. Since Tourette’s is so rare, affecting only 1 out of 1000 children, he hadn’t seen it before Jon developed it. This was a changing moment for Jon’s father. Jon’s mother had and always will be his biggest advocate. While it was easy for the school to see Jon’s behavior as purposeful, it may have surprised them that Jon’s father frequently felt the same way. It wasn’t until he truly understood the disorder and all it’s nasty friends that Jon’s father saw how much Jon didn’t have control over so many things. While this realization was very sad for him, Jon’s father understood what his son needed more than anything in the world, and that was to have his parents advocate for him. Jon couldn’t speak for himself, so his parents had to. They had to know the laws surrounding IEPs, 504s, and the whole special education process. They now had the knowledge that Jon should have an IEP that was funded by the United States of America. Not the school, and not the state, but the federal government. Jon’s rights would be clearly defined with an IEP.
Jon’s mother made many calls in the area to get Jon some therapy. When she would explain what Jon’s disorders were, she was either told “We don’t take those types of cases”, “we don’t take children” or “your insurance doesn’t cover it”. This went on for months. Jon didn’t have options that all children should have.
That summer, in addition to his regular job, Jon’s father would help out at the school. Whether it was cleaning the floors or helping to knock down a wall for the new library. He would see teachers here and there, mostly when they came in for planning meetings. Some children were there for a summer program, but for the most part it was quiet. Jon’s father would speak with the facilities manager, Miss Chick, about Jon and his problems. She would say that Jon was a sweet kid, and that very few teachers there “got” him.
In the ten days before the start of the new school year at that charter school in the County of Kent, everything changed. Lady Kathryn quit. Lady Ellen resigned. The counselor that Jon had spoken with on many occasions was gone. Several teachers quit. Jon’s father learned that the school was placed on academic review based on the school’s standardized test scores. These were the key positions the school used as it’s foundation, and now they were all gone. Even though Jon’s parents didn’t always agree with their opinions, they all knew about Jon and what his disabilities were. They had to brace themselves for major changes at the school.
Every charter school or public school district in the Kingdom of Del has a Board that determines everything about the school. The board meets and votes on changes or hirings. If it affects the school, they deal with it. From curriculum, to finances, to discipline, to the student handbook. Their fingerprints are all over it. Based on the size of the school, the Board can only have one or two members of the faculty on it. For that charter school in the County of Kent, Miss Cersi was the faculty member on the Board. There was usually a parent representative, but most of the Board consisted of members of the community.
One day, Jon’s father was speaking with a member of the Board about Jon, and his concerns about all the new faces. The Board member advised Jon’s father that the school hired a behavior coach named Miss Interpretation. The Board member told Jon’s father she used to be at the high school. Jon’s father didn’t catch the name, but the Board member told him that she will be an excellent resource for Jon.
The next day, Jon’s father made it a point to connect with Miss Interpretation. He knocked on her door, and the woman that answered the door was a familiar face to Jon’s father. And she remembered him from when he worked at the high school. It was Miss Perspective! She had gotten remarried and she was now Miss Interpretation. Jon’s father explained everything about Jon and his disorders and his opinions about how the school handled things. She told Jon’s father she was an expert on Tourette’s and ADHD, and she had many patients involving children like Jon. Miss Interpretation proudly exclaimed she was going to help Jon. Jon’s father wanted his classes to be educated on Tourette’s Syndrome so the other children would understand Jon better. She became very excited, and vowed to do one better: she was going to help Jon learn how to do that himself. Jon’s father quickly called Jon’s mother and told her all about Miss Interpretation. He was beaming with hope and thought this was exactly what Jon needed! While Jon’s father was talking on the phone with Jon’s mother, Miss Interpretation came into the room, and she spoke with Jon’s mother. They spoke for a while, and in front of Jon’s father, she told her that she wanted to schedule a meeting as soon as school started to clear the air on what happened previously at that charter school in the County of Kent, and start fresh. This was the blessing Jon’s father had been praying for and this was the type of person Jon desperately needed.
“Cause I will be your force, and I will be your right, and I will watch over you like a satellite.” Collective Soul
Important note from Jon’s loving father: Sometimes a story writes itself, and sometimes a story becomes a story. Jon’s story has been read by A LOT of people. It has touched people, and touched other’s nerves. People who know me have reached out to me because they have gone through something so similar. Teachers have written me about how it has taught them something. I look in the comments, and I see teachers who still wonder what their functions are with this process.
When I set out to write Jon’s story, it wasn’t to lambaste his school. It was to show what happens, everyday, in schools across America. If stories like this aren’t told, no one will know. IDEA is confusing enough, but to add in something like Tourette’s Syndrome can make it even tougher. I would implore all of you to wait for a final judgement until the story is done. It’s almost over, only a few chapters left. The remaining parts have some very rough times. They are the heart of the story in my opinion. The ending is not what you expect, even those who think they know the whole story. Nobody knows it, not Kilroy, not the school, not even my wife! You could try to guess, but you won’t know…until the end!
I firmly believe things will happen from this story. It has already conjured up a great deal of debate in this state. My hope is that it will benefit everyone. Cause the way it’s been going, it just doesn’t work. Yesterday I went to a seminar on special needs children and it spotlighted IDEA and 504. There were so many parents there who didn’t know the first thing about the process. There were educators, special ed people, and even a Senator. Everyone there had a vested interest in helping out the one thing that this story is all about…our children. Writing this story has changed me. I have much different thoughts than I did at the beginning, and that’s a good thing.
Jon’s loving father
To be continued
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