Chapter 4: of strange noises, anxiety, and a Frenchman’s discovery
The Game Of Puppets Fact
#7: On June 2nd, 2010, the Common Core State Standards was released. Delaware’s governor, Jack Markell, supported Common Core, which is designed to make children in the USA ready for college and work.
The Game Of Puppets
Fact #8: Between 2002 and 2009, disabilities in children rose 16%. After the behavior contract and the meeting about sensory processing disorder went nowhere, things seemed to calm down between the school and Jon’s parents. Miss Summertop even loaned Jon’s parents a book about sensory processing disorder, and said it had a lot of good ideas she was going to use for her class.
Meanwhile, Jon’s father continued to help Miss Jackalope at the high school with her math class. He enjoyed helping the students. He had told Lady Hammerspeak, the principal of the high school, while he was willing to help with any class, math was at the bottom of the list. But that was what he was given, and he accepted the challenge. Miss Jackalope, in his opinion, was an excellent teacher. Once a student connected with her, they wanted to do the best they could do. There were no major behavior issues, even with the eighth graders. There was a lot of anxiety and energy about where the students in 8th to 11th grade would go the next year since the high school was closing. A decision was made to keep the 11th graders in the school the next year so they wouldn’t have to spend their senior year at a new school. Jon’s father had one favorite part of the day, and that was when Jon would come on the school bus from the elementary school to the high school. Jon would meet him and on the drive home they would talk or go to karate.
Jon loved karate, but even the instructors there would advise Jon to stop moving his body when the situation didn’t call for it. Jon had decided to let his hair grow longer and it began to hang over his face. Jon’s parents noticed he would frequently blow out his mouth. Jon’s father thought he was trying to get hair out of his eyes. Jon’s mother explained to them about Jon’s sensory processing disorder. They listened, but it eventually became too much for Jon, so he chose to quit karate. Jon’s parents had tried t-ball, softball, gymnastics and basketball. It would be great in the beginning, but the novelty would wear off. One thing Jon would never waver from was drawing. He would draw anything! Whether it was his favorite characters from his Wii or Nintendo DS games, superheroes, lego characters, his favorite pop singers, or even his friends.
Jon also loved to play videogames. Jon’s parents were concerned about the nature of some of his games, but Jon enjoyed them, and he wasn’t showing any violent tendencies. When Jon would play, he was calm and at peace. He wasn’t stressed about school or friends. It actually had a calming influence on him most of the time. The summer passed by, and Jon would go to summer camp, or go to the beach, or just hang out at home. Like most students, summer was a more relaxing time for Jon. He was not surrounded by the demands of the school and behavior contracts and having to stay in his seat and do schoolwork. Jon’s parents were more relaxed as well. They would all spend afternoons playing in the pool or watching tv or go to the movies.
As 3rd grade grew closer, so did Jon’s anxiety. Jon’s parents noticed Jon developed a new habit where he would make a noise with his mouth, like air coming out of a balloon. They would tell Jon to stop, but he would keep on doing it. School began, and the elementary school at that charter school in the County of Kent was moved to where the high school used to be. Jon and his parents went to the opening of the new elementary school. Members of the school board, Lady Ellen (the superintendent of the school), some local politicians and members of the new Kindergarten class cut the ribbon at the opening ceremony. An open house was held where Jon could see his teacher. Of course, since the 2nd and 3rd grade classes were joined together, Jon had Miss Summertop as his primary teacher. But Miss Volume moved to the Kindergarten class, so Jon had a new math teacher named Miss Toms. Jon’s father used the open house to let teachers know he was available to sub Tuesday to Friday.
On the second day of school, Jon’s father received a call to sub for the paraprofessional in another 2nd-3rd grade classroom. Miss O had been sick, so Jon’s father served as her sub for the next two and a half months. The teacher in the classroom, Miss Jeter, was a very good teacher. Her classroom was clean and tidy, and the students would respect Miss Jeter when she spoke. She had a commanding presence, but she would take the time to listen to students questions. Jon’s father quickly noticed there was no fighting in the classroom. Students wouldn’t openly tease each other. Sure, there were the same problems you would see in most 2nd or 3rd grade classrooms, but nothing like students being sent to the office all the time. Given what Jon had observed in other classrooms at that charter school in the County of Kent, he surmised that students could actually do well there given an orderly environment.
Miss Summertop approached Jon’s father one day about concerns she had with Jon. She stated that Jon would not produce any work and he would have issues with his peers. It was like no time had passed at all and the complaining was beginning again. It was Jon’s father’s opinion that Jon would not be able to change if the teacher wouldn’t change. No plan was ever given by Miss Summertop for Jon or his problems. It was as if Jon was there, like a favorite chair. It’s broken, been there for a long time, and falling apart, but it’s a part of the room. Jon’s father didn’t really know how to respond to her. He had heard the song before, many times, but without a plan, what was the point? Jon’s father had some similar problems in school growing up, but Jon’s seemed to be magnified to a higher degree.
Jon’s mother was at the same point as Jon’s father. Her emails with Miss Summertop would frequently reference Jon’s sensory issues as neurological. Miss Summertop would email back how other staff and teachers agreed and nobody saw Jon’s behavior as bad. But Jon was still sent to the office when his “bad” behavior manifested or he would be sent to the hallway when he was unable to control his reactions. Jon’s father would frequently pop in, and he noticed an environment that was vastly different from Miss Jeter’s classroom. It also seemed as if it was worse than the year before. Usually Miss Summertop’s reaction to this chaos would be to change the room around. This was done at least five times during the first trimester of school. Eventually Jon was moved to his own special section in the classroom away from other students. The negative effect of this was that when Jon wanted to be heard or had a question, he was louder. He would have to get out of his seat constantly to communicate with peers. The sensory stimuli Jon was receiving in the classroom was overwhelming to him, and his reactions to this were getting worse.
Jon’s mother requested that Jon receive an IEP based on his sensory processing disorder. An IEP stands for Individualized Education Plan. Jon’s mother researched the IEP process, and found that certain children qualified for an IEP based on their disabilities. The purpose of an IEP is to grant accommodations to students with disabilities in the hope of making their educational outcome better.
When Miss Summertop emailed Jon’s mother about issues she was having with Jon (inability to focus, interrupting, unable to comply with teacher’s requests), Jon’s mother asked her if she had read the occupational therapist’s report about Jon’s sensory processing disorder. She emailed back that she had done that a few weeks before. This was four and a half months after the meeting Jon’s father had attended where no services would be rendered by the special education department. Miss Summertop knew Jon would be in her class in 3rd grade and she never read the report for the last part of 2nd grade or over the summer. She had read a book on the subject, but never bothered to read the report for over four months. The report addressed Jon’s deficits directly. Jon’s father believed she wanted to help Jon, but she didn’t know how. She indicated that it was hard for her to help Jon as well as manage a classroom of twenty-one students. This was her second year of teaching, and it appeared to Jon’s father that she was feeling overwhelmed. He wondered how much support she may or may not be getting from the administration at the school.
Jon’s father sensed that some children in Miss Jeter’s class had disabilities, but no information was ever shared with him about any of the children in Miss Jeter’s class. Unlike the high school, he was never given information about who had an IEP or a 504. This was true of all the classes Jon’s father subbed for during Jon’s 3rd grade year at that charter school in the County of Kent. He thought it was on a need to know basis and he didn’t need to know.
All of the teachers there became very apprehensive and concerned when it came time for the fall DCAS testing. This test didn’t count, but teachers were measured by how much growth the students experienced between the first test and the third one, administered the following Spring. Jon’s father started hearing the term common core being used more and more. Three groups of students in each class went to different reading groups. A simple subtraction problem was broken down into several components which then had to be taught to the students. Jon’s father began to see a look of defeat on many teachers faces. They were no longer able to teach how they wanted to. They had to follow a very specific standard set forth by the Kingdom Of Del.
On one occasion, Jon’s father was asked to sub for MIss Summertop’s class. He was very nervous about subbing in a class with his own child. It was hard for him to be objective and do what was best for the whole class while dealing with his own flesh and blood. But it did help him to understand what kind of daily life Jon had. Jon’s father knew that it wouldn’t be exact, but it would give him a general idea. Both father and son were at their wits end by the end of the day, and Jon’s father told Miss Summertop he could never again sub for her again if Jon was in the class. The part that troubled Jon’s father was that Jon did very well in his Miss Tom’s math class. The behavior issues weren’t there, and Jon was very quiet and more focused on his work.
Jon’s mother had decided to switch Jon from a general physician to a pediatrician. She made an appointment for a physical for Jon with his new doctor. Dr. K was considered to be one of the best pediatricians in the area and she had never heard any complaints about her. During Jon’s physical, Jon did the blowing-out-of-the-mouth-sounding-like-air-coming-out-of-a-balloon thing. Jon was very nervous about the appointment because his worst fear would come to pass…the flu shot. What Dr. K asked Jon’s mother was the centerpiece to the puzzle that was Jon. All the other pieces of the puzzle connected to that one piece. Dr. K asked Jon’s mother if Jon had Tourette’s Syndrome.
Tourette’s Syndrome was discovered by a French neurologist by the name of Jean-Martin Charcot. He named Tourette’s after one of his students, Georges Gilles de la Tourette. During this time, Tourette’s Syndrome was seen as a bizarre and strange behavior. Many people mistakenly assumed that anyone who had this disorder would swear, curse, and say inappropriate social remarks to people. While this is a part of Tourette’s called coprolalia, it only exists in about 10% of Tourette’s patients. What patients of Tourette’s exhibit is defined as having multiple physical motor tics and at least one vocal tic. The tics can come and go, called waxing and waning. In many cases of Tourette’s, it is accompanied by what are considered co-morbidities. These are conditions that are a part of the spectrum of Tourette’s. For many Tourette’s patients, this can include Attention Defecit Hyperactivity Disorder (ADHD), Obsessive Compulsion Disorder (OCD), Anxiety, Depression, Oppositional Defiance Disorder (ODD) and Sensory Processing Disorder. These conditions are neurologically based and can often be seen as behavior issues when the reality is that sufferers of Tourette’s cannot control many of their actions.
For Jon and his parents, this opened a new window to the world. This diagnosis explained so much in Jon’s history. Jon “hitting” other students in lines was usually Jon swinging his arms and was a tic. Jon biting his sleeves or his nails was a tic. Jon’s frequent and different noises were tics. They would come and go, but Jon was not in control of them. Tics can be suppressed, but only for a short time. Usually after suppression, the person with Tourette’s is mentally exhausted. This explained why Jon’s behavior could be so different at home. It also explained why Jon’s behavior manifested itself in so many ways in school. Jon was going through days where he may have been fighting the urge to tic, dealing with his sensory processing issues with so much stimuli, and trying to focus. Jon was simply unable to do these things, especially in an environment not conducive to his issues.
Dr. K also strongly suspected a diagnosis of ADHD and referred Jon to a very well-respected neurologist in the County of Kent. The puzzle was finally coming together. It was just a matter of putting the pieces together. And now, in addition to Jon’s sensory processing issues, a firm diagnosis of Tourette’s Syndrome and a possible ADHD were added to the list of Jon’s diagnoses for his IEP evaluation. Jon’s parents thought for sure he would get an IEP at that charter school in the County Of Kent.
Meanwhile, Jon was starting to get the feeling that he was different from everyone else. The look in his eyes was one of confusion and fear. He just wanted to be normal. The days when Jon had been invited to lots of birthday parties had long since past. He had seen friends shuffle in and out of his life. He had his parents, who he knew loved him very much, but he wanted and needed more. Jon’s parents would hear things such as “I hate my life” or “Nobody likes me” and their hearts would cry. Their boy needed them but there were times they felt as lost as he did.
“Go to my room and I close my eyes, I make believe that I have a new life, I don’t believe you when you say, Everything will be wonderful someday.”