Bracelets

Was looking for something to post about TS, and I came across this picture of a bracelet.  It reminded me of the beautiful bracelets that Emily used to make.....



I hope she starts making them again!  They are one of a kind.  I bet they would sell great on her web site!

Faith Matters

This is so true - it is refreshing to see this reminder!

Spreading the Word about TS - Even More...

Emily's new website - http://supporttswithemilyadams.webs.com/ - Check it out!!!!!

Proud of You Emily

Missed a day of posting something in honor of Tourette's syndrome Awareness.  Been busy moving - just a little to do!!

Here is today's....

Emily - I am so proud of you and how you a are standing up for this cause.  You are such a STRONG person.  You can do ANYTHING you put your mind to!!!  Keep up what you are doing!!!   I LOVE YOU!!!  ~Mom

Em's T-Shirt

Don't Judge...

It's Just a Tourette's Thing!

TS Bracelets

Emily is doing GREAT at spreading the word about Tourette's Syndrome!! I am so proud of her.  She is selling bracelets to raise money for TS awareness!  I don't know how many she has sold, but they are going like hot cakes!!!!  Only $2.00 for one of these very stylish green bands!!!!

Vocal Tics in the Classroom

This is a GREAT article!!!!!

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Understanding and Dealing
with Vocal Tics in the Classroom

by Susan Conners, M. Ed.

One of the criteria for a diagnosis of Tourette Syndrome is vocal tics. The word vocal is a key word because it indicates that these are tics that someone can hear. Vocal tics can be a very difficult part of life with TS for people who have the disorder. These tics can be simple noises that a person makes, i.e. sniffing, throat clearing, snorting, squeaking, barking, humming, coughing, etc. But vocal tics can also be quite complex. They can include meaningful utterances that a person says and can be taken totally out of context, Or, they can seem at times very contextual and purposeful. I taught a young boy who would suddenly yell out, “I’ve got a chicken in my pants.” I have heard people with TS who repeat a phrase over and over or some whose vocal tics are triggered by something in their environment. One young girl had vocal tics where she would describe each of her teachers in a not so nice fashion. Her English teacher, who happened to be one of her favorite teachers, became “bubble butt.” Her science teacher was “hairy ears.” She did not want to say these very uncomplimentary things about her teachers, but each day as they walked into the classroom, she had to yell out their particular phrase. Immediately she would apologize because she felt so badly – even though the tic was completely involuntary.

A minority of people with TS have a vocal tic called Coprolalia which takes the form of a curse word or something socially inappropriate. It could also be a sexual comment, an ethnic slur, or a comment on someone’s appearance. Since it often occurs at the most inappropriate time, many teachers incorrectly believe that it is willful behavior which needs to be punished. For example, a young boy developed a vocal tic whereby he would yell out “whore” every time a girl in the class answered a question. I have heard many teachers say that they know it’s voluntary, because, immediately after saying the word or phrase the student looks around to see everyone’s reaction. This is a misreading of the situation. The students look around to see everyone’s reaction because they have uttered something completely involuntary, inappropriate and are very embarrassed.

As a result, educators often ask, “How do I deal with these disruptions in my classroom?” and “How do I allow one student to use such inappropriate words and phrases and not punish them as I would any other student who said the same thing?”

Remember the old adage, “Beauty is in the eye of the beholder?” One good approach is, “Tics are only disruptions in the eyes of the beholder.” It is first and foremost your understanding of and secondly your attitude toward the vocal tics that will make or break your success of having a child with TS in your classroom. Tics are involuntary. They are in no way willful. All tics, both motor and vocal, are believed to be the result of a chemical imbalance in the brain. Persons with Parkinson’s Disease have involuntary movements because of a similar chemical imbalance. We would never accuse a person with Parkinson’s of being disruptive and we certainly would not punish them for their uncontrollable movements. Tourette Syndrome is involuntary as well. People with TS are sometimes able to suppress some symptoms, but frequently this requires extreme energy and attention and – it only can be done for short periods of time. Suppression should not be confused with control. Typically when a person is expending so much energy suppressing, they are unable to concentrate on anything else. Tics when suppressed will almost always worsen in the long run when they are expressed later.

With vocal tics, the more a student is told not to do them, the more difficult it is to suppress them. It would be similar to telling you not to blink for the next two minutes and reminding you every 20 seconds not to blink. Reminding you would only make this even more difficult to accomplish and require more of your attention and energy. Also, when a person with TS knows that vocal tics are more unacceptable in a certain setting, the more likely it is that they'll occur in that setting. Tics almost always worsen with stress, anxiety, excitement and fatigue.
So now that we better understand the involuntary nature and the complexity of vocal tics, what do we do in our classrooms?

The most effective plan is simply ignoring the tics. This can be role modeled by the teacher. Another effective strategy is to educate everyone including the other students in the class. TSA has wonderful resources that can be used for this purpose which will be listed at the end of this article. Once classmates understand TS and why the student is doing what he/she is doing, the tics usually calm down naturally because the stress is lessened. Kids can be very understanding when we just tell them the truth, “The world is filled with differences” The sooner students realize this, the more tolerant and empathetic they become. They will make fun of and even fear what they don’t understand.

Giving the child with vocal tics frequent breaks out of the classroom to release tics in a more private, less embarrassing environment is also very helpful. I always send kids with these disorders on errands or give them a special pass to leave the room for a short break whenever necessary. I would not recommend suggesting to the child the he or she “needs to leave the room,” because that in itself can be stressful. Errands are great ways to let kids leave without them feeling like they’re not wanted in the classroom. Providing a safe private place for the child to go when tics are particularly difficult can also help tremendously, e.g., the nurse's office, the counselor's office, etc. This does not mean that the child will not tic in class, but the tics will be lessened.

Finally, vocal tics only appear to be disruptive because they are different from what we are used to experiencing in a classroom. I have frequently used a form that I created to perform classroom observations when a teacher appears to be having difficulty dealing with vocal tics in the classroom. In one column I have a list of interruptions that occur in classrooms across the country every day such as coughing, sneezing, blowing one’s nose, sharpening a pencil, intercom announcements, things falling on the floor, etc. In the other column I track the vocal tics of the student with TS. In 100% of the many observations I have done, the normal classroom interruptions far outnumber the vocal tics. So we return to the notion that, “Vocal tics are disruptive only in the eyes of the beholder.” Once everyone understands the disorder they will become as accustomed to the vocal tics as any other noises that they are used to hearing in the classroom.

I once conducted an experiment during a presentation on TS that I was giving to the entire staff of a very large public high school. There had been outrage on the part of several teachers because of the vocal tics that a student was exhibiting. Prior to beginning my presentation, I had arranged for the student and his mother to come into the back of the auditorium about 10 minutes after I had begun to talk. Shortly after they entered, we all heard a rather loud vocal tic. The entire audience turned toward the back of the auditorium. I kept talking. About five minutes later, we heard another loud vocal tic and this time about half of the audience turned around. The third time about 10 people turned around. After that we heard eight or nine more vocal tics before I finished my presentation and absolutely no one turned around. They understood what the noise was and just got used to it. The point was proven.

Teachers, you are the role models in your classroom. You can escalate or deescalate a situation simply by your reaction to it. You can either role model to the other students that being different is indeed not to be tolerated or you can allow a child to thrive and be accepted by his or her peers. What will you do?

Sited:
http://www.tsa-usa.org/aeduc_advoc/UnderstandingVocalTicsintheClassroom.html

What is Tourette Syndrome?

Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year. The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk. These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.

These involuntary (outside the patient's control) tics may also be complicated, involving the entire body, such as kicking and stamping. Many persons report what are described as premonitory urges -- the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur.

There are also verbal tics. These verbal tics (vocalizations) usually occur with the movements. These vocalizations include grunting, throat clearing, shouting and barking. The verbal tics may also be expressed as coprolalia (the involuntary use of obscene words or socially inappropriate words and phrases) or copropraxia (obscene gestures). Despite widespread publicity, coprolalia/copropraxia is uncommon with tic disorders.

Neither echolalia (echo speech) or coprolalia/copropraxia is necessary for the diagnosis of Tourette syndrome. However, for a confirmed diagnosis of TS both involuntary movements and vocalizations must be present. Echo phenomena are also reported, although less frequently. These may include repeating word of others (echolalia), repeating ones own words (palilalia), and repeating movements of others.

Although the symptoms of TS vary from person to person and range from very mild to severe, the majority of cases fall into the mild category. Associated conditions can include attentional problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional compulsive behavior, and learning disabilities. There is usually a family history of tics, Tourette Syndrome, ADHD, OCD. Tourette Syndrome and other tic disorders occur in all ethnic groups. Males are affected 3 to 4 times more often than females.

Most people with TS and other tic disorders will lead productive lives. There are no barriers to achievement in their personal and professional lives. Persons with TS can be found in all professions. A goal of TSA is to educate both patients and the public of the many facets of tic disorders. Increased public understanding and tolerance of TS symptoms are of paramount importance to people with Tourette Syndrome.

Sited:

http://www.tsa-usa.org/aMedical/whatists.html

Georges Gilles de la Tourette

Georges Gilles de la Tourette (born Georges Albert Edouard Brutus Gilles de la Tourette!) in 1857 was a French physician (today he would be described as a neurologist) who made several valuable contributions to medicine and literature. The first reported case of Tourette syndrome was by another French doctor named Itard in 1825. Dr. Itard described the case of Marquise de Dampierre, a woman of nobility who was quite an important person in her time. In 1885 Dr. de la Tourette described nine patients with the syndrome of multiple motor and vocal tics. His major contribution was to define these patients as having a movement disorder that now bears his name

Sited:
http://www.tsa-usa.org/aMedical/whatists.html

Tourette's Syndrome Awareness Month May 15 - June 15

Tomorrow is the first day of Tourrette's Syndrome Awareness month!

I support my Emily and all others with Tourrette's Syndrome! 

I am going to do my best to post something every day for the entire month to show my support!

Update on Emily

I wrote this E-mail to Ben's Mom, it sounded so good, I thought I would share it on my BLOG....
She is really doing great and I am happy with how it is going.

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Emily at Camp Twitch and Shout.
You can see by the HUGE smile, she had a
Great Time!!!!!

The appt today was with Dr. Andrews, the Neurologist.  We have the letter that I will be bringing to Venice High this summer to get an education plan started.  It will give her permission to leave class as needed, turn in homework late if needed and take longer times on tests.  The letter also requests a meeting with parent, staff and teachers to discuss plan. 

Meds - Dr. Andrews is letting Dr. Toufaxis at the "Rothaman Center" regulate the meds.  We go back to see her (well one of her partners because she is having a baby) on July 20th.  The Lexapro will probably be decreased at that time, and possibly the Abilify will be increased, we will see......

Therapy - Habit/Behavior Reversal Therapy will begin on July 25th at the Rothman center as well.  For that she will be seeing Dr. Storch. 

All the Docs at the "Rothman Center" work with the Director - Dr. Murphy.  She reviews all the cases, but we have not seen her yet.  Dr. Toufaxis said we will see her at some point because her specialty is Tourette's Syndrome and because Emily has a severe case, she thinks Murphy will definitely want to see her.

All is going well, Emily is enjoying Dance camp this week, but thinks she might rather cheer again with the Vikings (all her decision).  She has been talking with some of the girls and she thinks she would enjoy it more this year......  I told her the decision is hers to make, but I will support her either way. 

Emily really enjoyed her time at camp and made a lot of great friends.  She wants me to take her back to the "Family Camp" in September.  Kids do the fun stuff and the parents learn about the disease...... it is the same weekend as scrapbooking, but this is MUCH MUCH more important!!!!!  I already have the weekend off, so I am canceling scrapbooking and taking Emily to camp - again!!!!! 

Emily's symptoms are about the same as before, no significant change.....  She is handling it all very well, I am so proud!! 

Where Have I Been...........

Three has been a lot going on.  The biggest turn of events in our lives is that Emily has been diagnosed with Tourette's Syndrome.  It has been a very emotional month - making doctor appointments and getting medications regulated.  I have had so much support from my family and friends - thank you ALL for everything you have done for us! 

At the beginning of June, Em had a short stay at ACH for testing.  Emily is doing very well and everything went fine at the hospital. They ruled out everything else that could have been causing her symptoms. 

Of course, I took pictures of the whole ordeal. So, here is a recap of the adventure.......

In the ER - seen by the ER doctor and awaiting an EEG.

Still waiting for the EEG.  Reading helps the time go by!

All hooked up for the EEG.

Nice Hair - after the EEG.
Oh, by the way, the EEG was normal!!

Emily's first IV.

Emily's nurse gave her a little puppy for getting the IV done!

Some of the meds made emily a bit sleepy.

I got Emily these two little guys,
they look like Sheeba and Alpo!

Hair done for the MRI - my first french braid ever,
that's what my Emily wanted - so I did it!