In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD. Below is some basic information about Tourette Syndrome and a description of our experience with it.
Tourette syndrome (TS) is a neurological disorder which presents itself with repetitive, involuntary movements and vocalizations called both of which are called tics. It is estimated that 200,000 Americans have the most severe form of TS. As many as one in 100 exhibit milder and less complex symptoms such as simple motor tics or vocal tics. TS usually begins in childhood.
The first signs of Tourette Syndrome with my son was 3 1/2 years ago when he was in third grade. Initially, I did not recognize the symptoms. His first tics consisted of a sniffing type of tic. When this first started, silly as it sounds, I thought he had forgotten how to breathe through his nose . It scared me because he was not breathing right, and I did not understand what was going on.
Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a small number of muscles. Some of the common simple tics include eye blinking, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocal tics can include repetitive throat-clearing, sniffing, or grunting sounds.
Complex tics are distinct, patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting. Complex vocal tics include words or phrases. Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself in the face or vocal tics including coprolalia (uttering swear words) or echolalia (repeating the words or phrases of others).
With my son the sniffing tic went on for about two months. Then his tic changed to a vocal humming tic. I still did not understand what was going on and I actually criticized him for doing the humming. On his birthday, we went to a movie which he had been looking forward to for a long time, and afterwards we stopped at a department store to buy the video game. He was very, very excited. As we were looking at the video games, his humming tic change to the sniffing tic. It was at that moment that I recognized the symptoms of Tourette Syndrome. His tic had changed right before my eyes. I felt really guilty and was really sorry that I had criticised him for something he could not control.
Within about six months his tics became more severe and shifted from simple tics to more complex tics. His tics consisted of erratic body jerks and yells that sounded like a yell of pain. There were nights when this went on and on for three hours.
I worked with both a neurologist and a neuropsychologist to evaluate what was happening and to identify a plan to address the situation. They surmised that the events were being triggered by anxiety. We arranged for my son to work with a therapist to learn how to deal with the anxiety. We also created an education plan that included a list of requirements needed for my son to be able to return to school, which included a detailed explanation of what Tourette Syndrome is, and how to respond to it.
I was really concerned that he was missing so much school and he was falling further and further behind. When all of this escalated we kept him home because on some days he got very little sleep, or his events kept going on and on throughout the day. In third grade he was in a standard classroom. In addition he was getting some Occupational Therapy to help with some of his motor issues and tremors. He also saw a language/ reading specialist. My biggest concern for him when he went back to school was: his ability to walk and not fall down, the reaction from others about the yelling vocalizations, the safety of him holding objects, such as a pencil, and having some privacy when the events occurred.
He had been out of school for about two to three weeks when the school started escalating their concern about him missing school. So, I brought him to school, led him to his classroom. I wanted to hang around a bit to see how they handled the situation. While waiting, I met with the principal. From our discussion, it was obvious they had no idea what was going on and how severe the situation had become.
The principal asked me what we needed to do to get my son back in school. I told the principal that they were not prepared for my son to be in school. I think he was caught off guard by this statement. I told him that I had recommendations from the neurologist and neuropsychologist. For the purpose of getting him to understand the severity of the situation and come to the same conclusions that the specialist had, I started asking him questions. I said, “These events can go on for two to three hours at a time and really drain my son’s energy. What are you going to do to help this during a school day?” He suggested my son should come to school with a a reduced schedule, and slowly increase it over time. In addition he offered the use of a tutor to help catch up with school.
I then asked, “What are you going to do if he has a round of these tics and falls down or pokes himself with a pencil?” The principal said we could get an aid to watch him, and to also encourage him to get back with the flow of the class. I asked, “What are you going to do if these tics go on and on? There is no way he can sit in a desk while this is happening. Having these events in a public place could also increase anxiety and the cycle of tics may not stop. He really needs a safe, private area where he could go when the tics got bad.” The principal said we could put up a small divider area in the classroom along with a bean bag chair. I suggested that we get a bean bag that truly would provide some protection and not be one of their current worn out ragged bean bags. Initially he said he didn’t have anything different. I then offered to provide it.
While we were talking the teacher came with my son who was in the process of having a round of these complex tics. I told the principal that I was taking my son home for the day, and we would return when he had everything set up.
to be continued . . .