Posts Tagged ‘Tourette syndrome’

As I indicated in my previous posts, my son’s learning experiences in elementary school had lots of room for improvement, and in some cases did more harm than good.  It was our hope that sixth grade would be a better experience which would result in some actual education.  My son no longer had to deal with a social working turned teacher who, from his perspective, bullied and tortured him about his Tourette Syndrome.

A few days before the first day of school my son became really sick.  Throwing up.  Thirsty.  Drinking mass amounts of liquids.  It got to the point I couldn’t stop the throwing up.  I assumed he had a really bad flu.  He needed medical help, so I took him to the emergency room at the local hospital.  Initially the doctor thought it was a flu or a virus and they put him on an IV to pump in fluids and an antibiotic.  They knew my son had epilepsy and was on the drug depakote.  They took blood to evaluate whether his blood levels were okay as it relates to this drug, and then also do some basic testing.

The doctor came back and indicated that they had found something unexpected.  One of the tests they took was an A1C which is a test that measures the glucose levels in a person’s blood.  My son had diabetes.  I was absolutely shocked.  My son already had so many things going on with his health.  It never occurred to me that he would have one more challenge to face.  Looking back there were many different signs.  He had lost lots of weight in a three-month period.  At that point the doctor said we needed to transfer my son to Children’s Hospital.  They would have better experts there to help my son.

My son was in the hospital for several days.  It took awhile for them to get all of levels closer to normal.  When a person has diabetes, particularly type 1 diabetes, and their glucose levels our out of control, the body goes through many chemical changes.  The sodium and calcium levels become off.  My son’s body could not deal with the glucose, so his body was basically eating away at itself.  While at the hospital we went through a lot of education classes.  What type 1 diabetes is, how to manage it, and how to deal with day-to-day life.

As a result of this, my son missed a week and a half of the first days of school.  When he returned to school on his first day of sixth grade there was one big surprise.  In his special education class he was sitting near a girl who was his best friend since kindergarten, but had been separated for a few years when she moved to a new elementary school.  He was so happy.  Sixth grade seemed to be going well.  My son enjoyed his Special Education teacher.  She seemed to understand what was going on with him.  She had arranged for a quiet place for him adjacent to the classroom where he could go if his tics became really severe.  Physical Education initially caused some anxiety which increased his tics.  She slowly helped him get over his stress and he was able to participate.  His other classes were pretty much uneventful.  It was a surprise to me how well he transitioned to this new school.  In addition, he was able to manage his diabetes pretty well at school.

The first hint that I had that something wasn’t quite right was when we had our first IEP meeting.  Most of the IEP goals were directed at accommodations that were needed for state testing.  The only other discussion was in regard to how to handle my son’s medical issues.  There were also some goals for reading, language, and math.  The meeting was very rushed and, like the previous school, was held before school started which now I realize was a tactic to limit the length of the meeting because teachers had to leave to attend to their classes.

The other odd thing that happened was when it came to Parents Teachers Conference.  His teacher said there was no need setting up a conference since we had just met on his IEP.  I responded ok, but later thought to myself she was not the only teacher my son had.  He had classes outside of Special Education, but in this conversation they were ignored.  Today, I regret agreeing because became the beginning of the end of this school for my son.

As school entered its last trimester, the school started to complain about my son’s absences.  Keep in mind he had missed eight days at the beginning of the year due to his hospitalization and onset of diabetes.  In addition when my son’s tics got really bad, especially at night when they went on for several hours with no relief, he would also miss some school.  Add to that his doctor appointments and days missed for general illnesses such as the flu.  I was a little irritated by their attitude, especially when his teacher said she had no problem catching up my son when he missed a day.

Little did I know that this was the beginning of the end and would bring us to some major decisions about my son’s education.

To be continued . . .

Fifth grade for my son was uneventful.  He loved his mainstream teacher.  For his special ed. classes (reading, language and math) he was stuck with the social worker serving as the special education teacher.  Serving is probably not an accurate description of her activity.  She was a thorn in my son’s and my side.  She did not understand Tourette Syndrome or Non-Epileptic Seizures.  My son had no privacy when these events went on, which could go on as short as a minute or as a long as forty minutes.  She expected him to continue working while his body was having these spasms of  tics and loud, yelling vocalizations.  She kept telling him he was fine, and to him, he did not feel fine. 

Something to note, since my son was put in Special Education I saw no evidence of school work.  No completed assignments, no home work (which was specified in his IEP), no comments in his assignment book, no nothing.  The only way I knew what was going on was by what my son would tell me.  In our teacher conference that happened once a year, they would flash a couple of papers in front of my face and tell me everything is going fine.  In those days I was not smart enough to ask for a definition of fine.  I made an assumption that they were doing what was best for my son.  They were supposed to be the experts. Big mistake that was.

What I did know is she was still teaching him math facts using the timed tests, which in turn created more episodes of tics and/or non-epileptic seizures.  I had given up trying to make the school stop.  Each day my son would come home and tell me how this teacher was treating him.  She was consistently punishing him for having these tics.  He was left out of any reward systems which was available for the rest of her students.  I kept telling my son to please hang in there.  This was the last year he would be in this school because he would be moving on to Middle School.  At that time he would not have to ever see this teacher again.

Toward the end of fifth grade the Middle School met with me to ensure my son’s transition went well.  The meeting included the principal, the special education teacher, the nurse, and the psychologist.  Based on the meeting they appeared to have their act together.  We talked about the various types of support my son would need.  They appeared to be very diligent in addressing these needs.  It was obvious to me that this school operated completely different than my son’s elementary school.

One of the best things that the Middle School provided is an orientation week before school started so that the students could get their bearing in the big middle school.  This school was the biggest middle school in our state and was quite overwhelming for students at first. 

In this orientation week they ensured that the student knew where their locker was and how to open it. The showed them where their home room was, which was the room they went to first thing in the morning and last thing in the day.  They were showed where the special education room was and explained what time of the day they would be coming there.  They showed  where their house was located (the grade was divided into houses, very much like Harry Potter) and the house location served as the hub for most of their standard classes such as English, Math, Social Studies, etc.  They also showed where art classes and physical education classes occurred.  For physical education they explained what to expect as it relates to another locker, clothing, showering, etc.  And finally they explained the bus routine.  This was a new thing for my son because he had not ridden the bus up to this point.  All in all I think this was a wonderful program.  The school brought together the population of four elementary schools into one seventh grade class at the middle school.

Parents were also invited to an orientation which was basically a demonstration of the rules, preparing the parents for middle school.  Believe it or not, I wasn’t anxious about this transitional year until I went to this meeting.  One of the big topics was school absences, which I was really concerned about.  I talked to the Vice Principal after the meeting about this topic and explained that my son would be using up his absences in no time, just for the purpose of going to doctor appointments.  At this point my son was seeing a neuropsychologist every three weeks.  He also saw his neurologist every three months.  The Vice Principal told me to not worry about it.  The absences were understandable.  Later, I learned the absences were a bigger deal that what the Vice Principal led on.

So we were set to start sixth grade.  I use the work “we” because the transition was not only for my son, but also for me.  It was like starting all over again with new people.  I explained to my son that this was an opportunity for us to start out new and not be impacted by personal prejudices that some of his previous teachers had shown.  He was looking forward to the year and was glad he was out of elementary school.

To be continued . . .

As I mentioned in my previous blog, it was in third grade when my son started falling behind in school.  It is also when he started to have some unusual movements and vocalizations, which may have been Tourette Syndrome or Non-epileptic seizures. 

After the school year for third grade was done, I got my son a tutor, which was his second grade teacher who he truly loved.  She worked with him on reading and actually got him advanced up two levels on leveled books.  Keep in mind I paid to have this tutor, which we did two summers in a row.

For fourth grade the school put my son into Special Education for both reading, language, and math.  The remaining classes were in his mainstream class.  After about two months the special education teacher wanted to meet with me.  In this meeting, which also included the Principal and the school social worker, their big complaint was that my son was having too many tics.  My reaction was “And so?”  We had been doing everything we could medically.  We had tried medications with no success.  My son was also seeing a neuropsychologist every three weeks. 

The second complaint was that my son needed guidance from the teacher in order to do his work.  Hello!  He’s in Special Education!  Isn’t that one of the principles of Special Education.  She also said that if she gave direction involving three different things.  He would follow through on one of them and then stop.  He could not remember the remaining two things.  She also complained that he could have gotten clues by looking around at the other five children in the room, because they were all doing the same thing.  Instead he would just sit there doing nothing.

I wasn’t surprised by any of this.  This was no different from what we experienced at home.  Over the years we learned to compensate for this without even knowing we were doing it.  We only gave him instructions one at a time.  There were somethings that we just didn’t ask him to do, because it would take too long, especially on busy mornings as he got ready to go to school.

Finally in this meeting the school suggested that we shift my son to a new room that had fewer children in it and could get more attention from the teacher.  The odd thing was the teacher was actually the social worker in the school.  She had no background in teaching special education.  This decision turned into a big disaster.  My son was then stuck with this woman through fifth grade.  We talked about teaching him “touch math,” which they only did for a couple of weeks and then went back to the one minute timed drills.  End result more tics.

The biggest problem with her was the fact that she punished him for having tics.  She gave him no privacy when he was having a bout of tics.  She expected him to be able to continue working as he was having the extreme movement tics and vocalizations.  Probably the most debilitating aspect of her teaching method was that she had no empathy for his circumstance. 

Toward the middle of third grade I read in the school newsletter that they were going to offer reading tutoring for kids and it indicated we would be getting additional information about this in the near future.  I was really excited about this because my son needed the help.  At the time he was almost two grades behind in reading.  So I waited for the second communication.  I waited, and waited.  Finally I reached out to the principal.  He responded that the program was done and was limited to a select number of kids.  I was furious.  He admitted this was an attempt at increasing their test scores for reading.  The only students that got tutored were students who were on the border of being behind in their grade.

My response to him was he had better watch out, because he is going to get sued.  Here I had been paying for a tutor which was an expenditure I could not really afford.  I was obvious my son needed help.  I told the principal that he was discriminating against my son.  I could tell he was not prepared for this reaction from me.  In the next year they had this tutoring program again and my son was invited. Now I don’t know if he got his equal fair share of tutoring, but he wasn’t excluded. 

Continued. . .

As I indicated in my earlier blog, third grade was a significant year for my son.  It is then that he started to exhibit some medical unusual symptoms. During the second half of the year my son was experiencing extreme body movements along with pain-sounding yelling.  The neurologist and neuropsychologist debated if these were non epileptic seizures or Tourette Syndrome or a combination of both.  What we did know is the EEG of these events did not have the pattern of an epileptic seizure.  We worked closely with the neuropyschologist to provide a plan for the school with direction about how to deal with these events.  In addition we set up a plan for my son to see the neuropsychologist on a frequent basis.

Keep in mind, my son’s first kindergarten teacher recognized he had learning disabilities.  By the time he was in first grade that got him reading and language support.  In second grade the school added some occupational therapy support.  Then his second grade teacher had reported that at the end of the year my son was having difficulty with math.  Even though I brought his second grade teacher to my next IEP, no actions were taken. 

During the second half of third grade the topic for math that was being covered in the classroom was learning addition and subtraction facts.  In my opinion this is what triggered the movement and vocal tics that my son was experiencing.  The way the students were being taught the math facts was via one minute timed test on a specific set of math facts, which progressively got harder as you worked your way through the sets.  Each student had a goal of how many correct math facts they could do in one minute, which included taking into consideration their writing speed.  As time went on, I finally figured out that it was these tests that were causing my son anxiety and the result was these extreme movement tics and vocal tics.  Just bringing out the green piece of  paper that the tests were given on would cause a round of these tics.

When this first started my son missed quite a lot of school because he had these movements at night for hours at a time and he had a difficult time functioning the next day due to lack of sleep.  The other big issue was his safety.  There was no way to truly predict when he would have a bout of these movements.  He would fall down or have his arms jerk.  The potential for him to harm himself was high.  Eventually the school understood there were certain things needed to be in place before he went back to school. 

My son needed a private place in the class room that was safe and provided privacy when he was having a round of tics.  They placed a bean bag behind a screened area. This really didn’t give him privacy.  The whole class knew he was having problems when he went behind the screen.  They could also hear his screams.  You can imagine the embarrassment he felt.  Just another thing raising his anxiety.

 They also provided an aide to be there for him so that he did not harm himself.  This turned out to be a big mistake.  She made him anxious and was very judgemental without having any experience with either non epileptic seizures or Tourette Syndrome.  She would constantly tell me son while he was having a bout of tics that he was okay.  To my son, he didn’t feel okay.  The movements were drastic and very real to him.  Telling him he was okay was like accusing him of faking his condition.

My son returned to school slowly, increasing the number of hours as time went by.  While he was in this part-time mode the school provided a tutor for him.  Unfortunately the tutor was his third grade teacher.  At the time I didn’t realize she was part of the problem.  During these tutoring sessions they required me to be present.  The only subject she worked on was Math.  She kept pulling out the green paper timed tests and my son would immediately begin to have these tics.  I finally asked her if she could teach this math without the timed test.  In my opinion, there had to be a way to teach him the math facts without doing these stressful timed tests.  She absolutely refused to adjust her teaching method, and obviously my son continued to have bouts of tics.

Here was an example of a very obvious problem and our school failed to adapt to the situation.  These math facts become a repeating theme in the next couple of years.  The unfortunate thing is my son had figured out addition and subtraction on his own before he even went to pre-school.  As a result of this situation in third grade he started to fall behind in math.  The school had all the information to take action as a response to intervention and instead failed.  The weight of that failure is now on my son’s shoulders.  The math story does not end here.

Continued . . .

I am sure many of you have noticed the story about the 12 teenage girls in Leroy, New York who all have been having tic-like symptoms.  According to the news, this started out of the blue with all of the 12 girls.  This news story has been going on for over two months and  most recently hit the national news.

I will be honest with you that there needs to be more discussion about Tourette Syndrome (TS), but I am not sure if this news item is really doing those who struggle with Tourette Syndrome any justice.  The news sensationalism is starting to sound like the Salem witchcraft hunt.

I have seen videos of some of the girls and it does appear that they are having both movement and vocal tics.  According to the news there has been intensive investigations into this situation and it has been determined that they have not identified any specific environmental factors that may have triggered the phenomenon.  I think the CDC is also involved in the investigations.

Over the last two months the diagnosis has been referred to as being Tourette Syndrome.  Unfortunately that does not explain 12 different individuals experiencing TS at the same time.  Most recently, I see the diagnosis is changing from Tourette Syndrome to a diagnosis of conversion disorder. Conversion disorder, formerly known as hysteria,  is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient’s life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV). 

Conversion disorder can present with any motor or sensory symptom including any of the following:

  • Weakness/paralysis of a limb or the entire body (hysterical paralysis or motor conversion disorders)
  • Impaired vision (hysterical blindness) or impaired hearing
  • Loss/disturbance of sensation
  • Impairment or loss of speech (hysterical aphonia)
  • Psychogenic non-epileptic seizures
  • Fixed dystonia unlike normal dystonia[clarification needed]
  • Tremor, myoclonus or other movement disorders
  • Gait problems (Astasia-abasia)
  • Syncope (fainting)
  • Hallucinations of a childish or fantastical nature  [1]

I don’t think this flip-flopping of the diagnosis is doing any benefit for those who have Tourette Syndrome.  To some extent, it is implying that Tourette Syndrome is psychological.  This misnomer has been a battle that every individual with Tourette Syndrome has faced. The big question: Is it real or is the individual purposely doing the tics?  If you have had any experience with TS, it is obvious that physiological that may be affected by psychological factors, such as anxiety.

This morning I saw two of the girls on a morning television show and they appeared to be frustrated because they knew no more today about what is wrong with the them than what they knew two months ago.  It almost sounded like if they had a specific diagnosis, it would imply that it could be treated and they would be cured.   When I heard this, I thought to myself, stand in line.

There are thousands of people in the United States, and all over the world, who would love to have some answers for Tourette Syndrome and have a cure for it.  From a research standpoint, it is my understanding that we are not even close to understanding Tourette Syndrome, let alone having a cure.

I am very glad there is discussion about Tourette Syndrome, but I wish it was more factual rather than being referenced with hysteria, or as a plague, or with conversion disorder.  I hope this does not negatively affect the funding for research for Tourette Syndrome.  We need research to continue and we need funding to do the research.  I am concerned that this flip-flopping of diagnosis is muddying the waters which could potentially affect people’s reaction to Tourette Syndrome.  To prevent this from happening, I think people need to talk about it more.  Get the facts out.  More importantly I expect a statement to be made by the Tourette Syndrome Foundation. I think it is best that we try to control the discussion, or at least add some credence to it. Instead, I hope this news story can turn into a positive. These 12 girls may provide a unique research study for evaluating Tourette Syndrome. Hopefully research teams can get involved and turn this news story into a benefit for Tourette Syndrome research.

You may ask why does this concern me so much.  My son has Tourette Syndrome, and at one time in his diagnosis stages conversion disorder was brought up. That was four years ago. Since then the doctors refer to his condition as Tourette Syndrome or non epileptic seizures (my son also has epilepsy). It depends on the type of tic being discussed.

Regardless of the label, Tourette Syndrome has put a heavy weight on my son’s life, and I don’t want some negative publicity making things worse than they already are.  Over the years the media has sensationalized Tourette Syndrome.  Tourette Syndrome patients were commonly seen as oddities on talk show stages.  I thought we had got beyond this.  Unfortunately the media loves sensationalism, and they are back at it.  See the following sensational headline, which references the plague.

For more information about the LeRoy incident see:  The ‘mysterious’ Tourette-like syndrome plaguing a N.Y. town

[1] Conversion Disorder, Wikipedia,  http://en.wikipedia.org/wiki/Conversion_disorder