Posts Tagged ‘Tourettes Syndrome’

From May 15 to June 15, the Tourette Syndrome Association (TSA®)—the only national, voluntary health organization for people with Tourette Syndrome (TS)—joins the hundreds of thousands of families affected by TS to help raise awareness of this baffling disorder during National Tourette Syndrome Awareness Month.

One of the main goals of the awareness campaign is to encourage people who are troubled by symptoms of Tourette Syndrome and to encourage them to seek medical attention.

Throughout the month, local TSA chapters across the country will work to raise awareness, increase education and reduce stigma associated with TS. One such event is Government Relations Awareness Week from May 30 to June 6. During this week, TSA chapters and families hold district meetings with elected officials and community leaders to raise local, state and federal elected officials’ awareness of issues impacting families living with Tourette Syndrome.

What is the Main Symptom of TS?

Tourette Syndrome is a condition of the brain that affects 3 in every 1000 children in the U.S.  A person with Tourette Syndrome has a symptom called “tics”. Tics are movements and sounds that are out of the person’s control. A tic can be something that is hard to notice like “throat clearing” or “rapid blinking” or a tic can be something easy to notice like “loud screeching” or “leg twitching”.

 There are also some conditions that may come along with Tourette Syndrome such as Attention Deficit Disorder, Obsessive Compulsive Disorder, and Learning Disabilities. The combination of these disorders can result in extremely complex symptoms.

My son has Tourette Syndrome.  He was diagnosed when he was 9 years old.  He is now 12.  It is a disorder that he faces every day of his life.  Going to school is extra challenging, both from an educational perspective and from a peer acceptance perspective.  Today we went to a restaurant and some of his tic events began to start.  I could tell he was upset, when he leaned over and said to me, “I don’t want everyone to see me when this happens.”  What does a parent do to help the situation?  He can’t stay locked away in seclusion.  My heart aches for him.  My response to him was, “Don’t worry about it.  If it happens, it happens.”  I hoped it would give him the courage to relax.  Unfortunately he continued to have difficulties.  So as soon as our food was brought to the table, we had it put into to-go boxes and we left the restaurant. 

It is this scene that my son faces every day.  I only wish I could take the pain, the sorrow and the stress off of his shoulders and let me carry the burden.  Unfortunately that is not possible.  Instead I stand at his side, proud, and defiant – defiant to letting the disorder get the best of us  – defiant to anyone who has a smart remark or a leering stare.  This is my son and I love him.  I only wish I could protect him all of the time, which isn’t always possible.  I just want him to know that it is nothing to be ashamed of and that he needs to stick up for himself.  It is not easy, but I will make sure he survives.  We pray for a cure, and look forward to the day when it comes so we can yell out in celebration.

 http://www.tsa-usa.org/news/images/TSA-Awareness-Month-Flyer2011.pdf

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This is a really good video which includes a story about a girl that has Tourette Syndrome.  It is from the True Life series on MTV.

My son has Tourette Syndrome and this video helped me to understand some of the things he goes through.  It also showed me some tics that are called self-injury tics, which is something we have been dealing with.

May 15th through June 15th is Tourette Syndrome Awareness month.  Throughout the month, local TSA chapters participate in programs to raise awareness, increase education and reduce stigma associated with TS.  To learn more about this check out the following flyer:  Tourette Syndrome Awareness Month 

I have had the opportunity to meet several people, via Twitter and Facebook, whose lives have been touched by Tourette Syndrome (TS).  In my case, my son was diagnosed three years ago and is now in 6th grade.  It has been a long, tough three years with no real resolution yet.  Each day TS reminds him that it is still present, whether it be a jerk of a limb or sound from his mouth.  Each day he deals with the partners that go along with TS, including obsessive compulsive disorder and attention deficit disorder.  Each day he goes to school and faces the fact that learning is a little bit harder for him.  Each day he faces his fellow classmates and prays that no one notices his tics.  Each day he, at one time or another, tries to hold the tics inside with minimal success.

Take a moment to meet some of these great people on Twitter who frequently deal with the world of TS:   @nicoledimas, @mylesrwalker, @phoebewonderlan, @JaysChallenge@teensWts, @LisaAnnSings, @soc378, @PAdEntremont, @Tourettes_Mum, @touretteshero, @Robinae24, @swissvalley, @iTube4Tourettes, @themoxiemomma

Also take a look at this video.  It is from @goldylookfleece and it will tell you a little more about TS.  Not only is the information very helpful but the photographs and music are really well done.

 

 

If you have been following my posts, you may know that my son has a number of health issues including epilepsy, juvenile diabetes, tourette syndrome, and a number of comorbid things that go along with this which includes some learning disabilities.  As a result of all these issues, my son has been on an IEP since first grade. 

Everything was going along fine in school.  In both first and second grade he was keeping in step with the rest of his class.  The only unique event that happened in first grade is his teacher had a baby right before school started and there was a substitute until after Christmas.  Unfortunately, for that year he had to get used to two different teachers, which can have its issues too. 

At this time he was getting a little extra help for reading, writing and language and some OT.  He was also able to keep up the pace with the rest of the class.  At the end of second grade his teacher told me that by the end of the year he was starting to have a hard time with math, and she recommended that we get math included in his IEP.  So, in the next IEP meeting at the beginning of third grade, I requested that his second grade teacher attend and requested that she give her recommendations.  All went well and they added objectives to his IEP as it relates to math.

It was in third grade that everything fell apart.  It is also when his tourette syndrome began, though he had not been diagnosed yet.  After the winter break in December, my son started to have some vocal tics and motor tics that were pretty severe.  I kept looking for a trigger of some sort.  His neurologist was not sure if these movements and sounds were tourette syndrome or non-epileptic seizures.  He suggested we start working with the neuropsychology department, and my son began seeing a neuropsychologist. 

My son missed quite a bit of school, but he was keeping pace in math with the rest of the students.  When his tourettes became really bad we switched him to attending  school for half a day and the school provided a tutor to work with him.  He also had an aid with him at school for safety purposes.  Coincidently, his third grade teacher was going to do the tutoring in the late afternoons and Saturdays.  To accommodate everyone I brought my son to school during these off hours.  It was required that I be present.  So I sat in the same room with my son and his tutor as they worked.

It was then that I started to see some of the issues that were going on at school.  I could tell that his teacher was very intense.  Just listening to her voice raised my anxiety.  I could see that her interactions with my son was also raising his anxiety level.  The other thing that was obvious is that she believed my son could control his tics, and she expected him to be able to work while he was having the tics.  The other thing of note is math was the only subject she included in the tutoring.  No science.  No geography.  No reading.

The other big mistake was his aid.  Her role was to make sure he did not hurt himself when he was having a bout of his tourettes.  Secondly, she was to offer encouragement so that he could get back into the flow of things in his class.  It turns out this woman did not believe that my son’s tics were not purposeful.  At this time my son had not learned any techniques to reduce the intensity or the frequency of the tics.  This woman kept telling him, “you’re okay.”  Well he didn’t feel okay.  These tics were pretty scary for him and the last thing he wanted to hear is “you’re okay.”  She also did not give him any freedom to just  be a kid and be himself.   One day he was having some tics on the playground and the school nurse’s assistant noticed it.  So she brought him into the school.  As the rest of kids came in from recess his tics had subsided and the nurse’s assistant walked him to his classroom.  After she left him the aid came up to my son and accused him of escaping from her and that he was not supposed to do that.  He tried to tell her that the health office had brought him in, but she didn’t listen and continued to berate him.  Once again, not a good thing for my son’s anxiety.

We finally got through third grade, unfortunately not unscathed.  Right before fourth grade started, the school wanted to have an IEP meeting with me and to make plans for fourth grade.  This was a little unusual.  In the past we never had IEP meetings this early in the school year.  It was their recommendation that my son would take his core subjects (math, reading, writing, language) in the special education room with the special ed teacher.  The school said he would then get the help he needed and could also be working in a small group setting.  They could also use different teaching methods that may work better for him.  I thought that was not such a bad idea and was fully supportive. 

The other thing of note was that right before school started, his fourth grade teacher was diagnosed with cancer.  They were going to have a substitute until she could return, which they expected would be after the winter break.  Great another year of having two teachers.  Not a good situation for my son. 

I had a discussion about this with the principal as we were approaching the time when they would switch teachers and told him, that it isn’t right.  Many of the children in this class had this already happen to them when they were in first grade.  It put a damper on them getting the most out of the teaching.  I said to him it is not right to do this for two years out of the five.  The kids have to get used to two teachers who have totally different teaching styles.  In the end it affects what they learn.  In my opinion my son was getting the short end of the stick.  He was already having problems learning, and never really got a chance to make a relationship with his teacher and get into the rhythm of how she teached.

As we got half way through fourth grade the school requested to meet with me, which ended up being an IEP meeting.  The special education teacher said that my son was difficult to work with.  She said he was not a self-starter.  She said that he was not able to follow directions and was not able to take queues from what the other kids were doing.  She said he basically sat there until she came to him and guided him on what he should be doing.  As I listened to her I thought, this can not be that unusual for a special education teacher.  The principal then informed me that this arrangement was not working out and that they were going to take my son out of the special education room, and instead, for the core subjects, he would be in a room independently with a woman who originally introduced herself as a school social worker.  I thought it was odd, but if the school thought she was capable to educate my son, then who am I to argue.

This is where things went from bad to worse.  It started out with only my son working with this “teacher” for his core subjects.  This “teacher” ending up being his teacher for the rest of fourth grade and for fifth grade.  A number of things happened.  The individual program was changed to a group program.  So the dynamics of the setting changed.  It was also obvious she did not believe my son had tourette syndrome and in many ways implied he was doing the tics with his own control.  I had many meetings, emails, and phone calls with this teacher and with the principal.  In fifth grade there was not one week in the entire year that the principal didn’t get a phone call, a visit or an email from me complaining about how they were handling my son and that they were actually making the situation worse.

There biggest complaint was my son had tics whenever there was hard work to be done.  Once again an implication that my son was making the tics happen.  I got into a big argument with the principal over this.  I asked him if he thought my son enjoyed screaming and jerking all over?  I said, if my son was purposely making these events happen, then why is it that he has events in the lunch room, on the playground, while he was watching TV?  Obviously the principal didn’t know what to say. 

There were a lot of little things that happened with this teacher which just caused my son’s anxiety to increase.  She was also treating him differently from the others in his group.  For example, he was excluded from her reward system.  To this day I don’t know why.  She basicaly never had anything good to say to him directly and was always putting him down.  As we reached the last half of fifth grade, I told my son we just needed to put up with her until the end of the year and then he would not be returning to this school.  He would be moving on to the middle school.  The last half of the year was really hard and there were many times I didn’t think he was going to make it. 

My son was made to believe he could do nothing.  He couldn’t write.  He couldn’t read.  He couldn’t do math.  He couldn’t follow directions.  He never finished his work.  And his teacher didn’t like him and it must be because he could not do anything that would please her.  My son was basically bullied by his own teacher for a year and a half.  Yes I said BULLIED!

Yet in recent years researchers have discovered something that may seem obvious, but for many reasons was overlooked or denied. What really makes a difference, what matters more than the class size or the textbook, the teaching method or the technology, or even the curriculum, is the quality of the teacher.

Newsweek.com had an article called, Why We Must Fire Bad Teachers:  In no other profession are workers so insulated from accountability, by Evan Thomas and Pat Wingert on March 06, 2010. 

For much of this time—roughly the last half century—professional educators believed that if they could only find the right pedagogy, the right method of instruction, all would be well. They tried New Math, open classrooms, Whole Language—but nothing seemed to achieve significant or lasting improvements.

Yet in recent years researchers have discovered something that may seem obvious, but for many reasons was overlooked or denied. What really makes a difference, what matters more than the class size or the textbook, the teaching method or the technology, or even the curriculum, is the quality of the teacher. Much of the ability to teach is innate—an ability to inspire young minds as well as control unruly classrooms that some people instinctively possess (and some people definitely do not). Teaching can be taught, to some degree, but not the way many graduate schools of education do it, with a lot of insipid or marginally relevant theorizing and pedagogy. In any case the research shows that within about five years, you can generally tell who is a good teacher and who is not.

It is also true and unfortunate that often the weakest teachers are relegated to teaching the neediest students, poor minority kids in inner-city schools. For these children, teachers can be make or break. “The research shows that kids who have two, three, four strong teachers in a row will eventually excel, no matter what their background, while kids who have even two weak teachers in a row will never recover,” says Kati Haycock of the Education Trust and coauthor of the 2006 study “Teaching Inequality: How Poor and Minority Students Are Shortchanged on Teacher Quality.”

… Many principals don’t even try to weed out the poor performers (or they transfer them to other schools in what’s been dubbed the “dance of the lemons”). Year after year, about 99 percent of all teachers in the United States are rated “satisfactory” by their school systems; firing a teacher invites a costly court battle with the local union.

The only reason I quote this article is that I later found out that it was known amongst teachers and parents that my son’s third grade teacher was a problem.  Guess what the school did with her.  She was transferred to another elementary school that had just opened.  They didn’t fix the problem.  It sounds a little like the Catholic church and their pedophile priests.

Anyway, we were finally headed for sixth grade and the middle school, and it was like stepping into another world.

To be continued . . .

 

One so young shouldn’t have to go through this

It is not something that you can easily dismiss

I see the pain in your eyes

Relief from this would be a prize

If only I could take it away

No more of these jerks and shouts on display

I see you asking for help to make it stop

If only from you to me we could swap

I want you to be happy with your childhood

I wish the people with stares only understood

Standing with you I will always be

Till there comes a day that you will be free.