DON’T BLINK!

Do me a favor.  While you are reading this, play a little game with me.  I am talking through the 3rd wall here, to you, the reader.  Pretend I am on a stage and you are just one of hundreds of folks in the audience.  This game is called “DON’T BLINK!”.  You have to really focus.

I’m on the stage talking about your least favorite subject, whatever that might be.

DON’T BLINK!

You have to focus on not blinking your eyes.  Easy, right?  We’ll see.

As I babble on and on about your least favorite subject, DON’T BLINK!  I want you to take out a piece of paper.  I’ll wait for you.  While you are getting it though, DON’T BLINK!  Don’t even think about it.  Keep those eyes open.  DON’T BLINK!  Did you get your paper yet?  Did you bother to get a pen?  DON’T BLINK!

Good, you have your paper and pen.  I want you to write a set of numbers.  It will be 13, 26, 39, and you have to write down the rest.  DON’T BLINK!  I need a set of 20 numbers.  DON’T BLINK!

How many numbers do you have down?  But wait, while you DON’T BLINK and you are writing down the numbers, I want you to yell out “VITAMINS”.  But DON’T BLINK while you yell out “VITAMINS” while you are writing down the numbers.  Don’t you dare!  And don’t be caught off guard from the people staring and laughing at you because you yelled “VITAMINS”.  Because you have an assignment you have to get done.  And DON’T BLINK!

While you are doing all this, I want you to capture whatever smell is in the room and focus solely on that smell.  Smell it with every fiber of your being while you DON’T BLINK!, write down your numbers, and deal with the stares you got from yelling “VITAMINS”.  How many numbers do you have down?  If you cheated, you probably have the 20 different numbers.  That is, if you blinked, didn’t focus on the smells in the room, didn’t yell “VITAMINS”, and only focused on the numbers.

For students with Tourette Syndrome, this is their life in the classroom.  It can happen in other areas of schools as well.  When they are younger, the tics come naturally.  But as they get older, and notice more and more the odd little stares or classmates asking them what they are doing, they begin to do everything they can to suppress those tics.  But those tics are neurological in nature.  Little signals go out from the brain that affect those with Tourette Syndrome and command the body to do those things.  Suppression can be done, but it is energy that can’t be destroyed.  It comes out in other ways.

In the “DON’T BLINK” game, that exercise was for those who don’t suffer from Tourette’s.  So they can possibly understand, at a very small and miniscule level, what those with tics go through every day.  For far too many of these special needs students, that energy does come out in some way when they are suppressing tics.  But the more stimuli they have around them, the harder it is to focus on that.  Add a few different things to that soup, and you can understand why those who exhibit motor or physical tics have a hard time keeping their cool.  It is almost like having a case of the hiccups, all day, every day.

Suppressing tics also has another side effect: exhaustion.  It can be physically tiring to attempt to stop your body what it naturally wants to do.  Most students with Tourette Syndrome do not suffer from just that disability.  They have what are known as co-morbidities.  We’ve all heard the alphabet disabilities: ADHD, OCD, and ODD.  But add anxiety, depression, sensory processing issues, and yes, at times, rage.  It can be a perfect storm.

There aren’t many students with Tourette Syndrome in Delaware.  I know of less than ten myself.  There could be more.  But for even this small population of students, we MUST get it right for them.  They are counting on us.  For far too many Tourette Syndrome students across the country, schools want to address the disability the same way they would ADHD.  It is a complex puzzle, but the pieces can be put together.  It takes time, and patience, and calm.  We have come very far with Autism but I believe if it wasn’t so prevalent, we would be just as in the dark as we are with Tourette Syndrome.

In my opinion, a student with Tourette Syndrome should be celebrated in schools.  They are just like you and I with intelligence.  Many TS students are wicked smart.  But their body and mind can send out a signal on a dime without them even being aware.  Or other times it is like when you know you are going to sneeze and you try to stop it.  But most times, it is like trying to stop a case of the hiccups.  I believe it is incumbent on our schools, from elementary to high school, to let everyone they can possibly tell in that building, exactly what those tics are and where they come from.  Because if a student with TS is ticcing, they can’t help it.  Let them tic.  We wouldn’t tell a blind person to see or a paralyzed person to walk, right?  It is the exact same thing.  Let students and staff know it isn’t weird.  Do the “DON’T BLINK!” game with the students.  Let them know and feel what it is like for the TS student.  Talking about tics is VERY different from experiencing them.

This isn’t just about special education.  It’s about doing what is right.  We want to educate the “whole” student.  We want “compassionate” schools.  But we need to practice what we preach.  All schools need to do a better job with understanding manifestation of disabilities.  So many want to treat things as a behavior.  Unless you are 100% sure, assume it isn’t.  If you are a teacher or staff member in a school that doesn’t teach a TS student, let me make a recommendation for you.  You might be generally aware a student has disabilities but you may not be sure what the manifestations are.  Ask your building leader or special education coordinator if you can see their IEP.  I’m pretty sure most parents wouldn’t object to any adult in a school wanting to know more about their child with Tourette Syndrome.  As parents, we can only educate so many.  We have restrictions the school might not have.  We don’t have access to every single teacher or staff member.

Students with Tourette Syndrome go through things daily you and I can’t imagine.  At the end of the day, they want what we all want- to be loved and accepted.  That’s all.  Nothing more, nothing less.

An Important Announcement From The Tourette Association of America

The Tourette Association of America is looking for help with pending research legislation at a national level as well as more inclusion of Tourette Syndrome in a potential reauthorization of the Individuals with Disabilities Education Act (IDEA).  Please follow the links at the bottom of each announcement to get your elected officials to participate in a very important briefing on the research legislation and so they understand how Tourette Syndrome severely impacts students with this disability.

Dear Tourette Association Members, Family and Friends, 

The Tourette Association of America has a great opportunity to advocate to be potentially included in federal legislation known as, H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. This bill will support systematic epidemiological research, data collection and analysis of neurological diseases at the CDC.

 What The Bill Does:

This bill would enhance and expand infrastructure and activities to track the epidemiology of neurological diseases including the incidence, prevalence, and other information and incorporate this into a National Neurological Diseases Surveillance System. In addition it would facilitate further research on neurological diseases at the Department of Health and Human Services (HHS). 

Why This Is Important for Tourette:

Prevalence data on Tourette Syndrome in children is inconclusive and contains conflicting results. In addition, there is little to no information on the impact of the disorder in adults. This bill could establish the prevalence of Tourette and help close the gap between identified and undetected cases, especially among ethnic and racial minority populations in the U.S. The bill could also provide for surveillance of Tourette in the U.S. that could provide insights into the long-suspected environment role in the development of the disorder. 

TAKE ACTION NOW:

On September 16, 2015 the Tourette Association of America and a Coalition of 11 Non-Profit Neurological Disease Associations will be holding a Briefing for Senators and their staff on H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. The briefing is sponsored by the Tourette Association in collaboration with the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, and United Spinal. 

Most recently, the bill passed out of the House of Representatives as part of the 21st Century Cures Act. In order to make this bill a top priority in the Senate we are asking that you, your family and friends to email your Members of Congress to ask for both support of Tourette Syndrome and the Advancing Research for Neurological Diseases Act; while inviting staff members to attend the Congressional Briefing on September 16th

Write your Members of Congress and urge them to support this initiative by personalizing our form letter. Email Elridge@Tourette.org to let us know you took action. Thank you in advance! 

Click here to TAKE ACTION NOW!

And the second announcement:

Dear Members, Family, and Friends,

Since 2006, Members of the Tourette Association have witnessed the powerful role policy has in supporting students with disabilities when Tourette Syndrome was included within the Individual with Disabilities Education Act (IDEA).  As Congress discusses ways in which to improve the education system, hold students and teachers accountable we invite you to voice your concern and relay 3 specific recommendations on how to meet the needs of students with Tourette and Tic Disorders.

Why This is Important!

According to the US Center for Disease Control and Prevention (CDC) 80% of children with Tourette have additional health conditions; 50%-70% have co-occurring Attention Deficit-Hyperactivity Disorder (ADHD) and 30-50% have Obsessive-Compulsive Disorder (OCD). Individuals with Tourette routinely have higher rates of anxiety, depression as well as learning disabilities. These conditions can have a negative impact on a person’s education, career and social life; decreasing their quality of life. Please advocate for Tourette and Education Services.

 Click Here to Advocate Now!

 

First Annual Tourette Syndrome Awareness Walk of Delaware

On Saturday May 16th, the Tourette Syndrome Association will be holding it’s first Tourette Syndrome Awareness Walk of Delaware.  The location is Glasgow Regional Park in Newark, Delaware.  You can either participate as an individual, join a team, or create a team.

Sponsored by the Tourette Syndrome Association, this walk will help spread awareness and understanding of the disability that is widely considered to be one of the most often misunderstood disabilities in the world.  Please come out and help spread awareness!  To register, please go to the following website:

https://www.classy.org/newark/events/first-annual-tourette-syndrome-awareness-walk-delaware/e44627?fb_action_ids=363610033825378&fb_action_types=og.comments

As a father of a son with Tourette Syndrome, I can say this disability is extremely challenging at times.  It can manifest itself in many different ways, and is usually accompanied by several co-morbidities which can include ADHD, OCD, ODD, anxiety, depression and others.  While nobody knows the exact cause of Tourette’s, whether it is genetic or environmental, those involved know there needs to be more public awareness and tolerance of this disability.