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.

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.

Living With Tourette Syndrome

Tourette Syndrome Awareness Month will take place this year from May 15th to June 15th.  My son has Tourette Syndrome.  As I try to educate myself on his journey through a very complex and often misunderstood disability, I find the best way to understand it is to hear from others who have it.  As such, a gentleman posted the following in a Facebook group this afternoon.  With his permission, he allowed me to put it on this blog:

Let me paint a picture for you. Imagine yourself:

-getting beatings for tics and then having severe outbursts afterwards.
-being hit in the face so hard that your nose starts bleeding.
-being pinched in the arm and having nails dug into your skin every time you tic, then having to wear long sleeve shirts to hide the blood coming from your arms.
-being targeted, bullied, and made fun of at school and in the neighborhood every day.
-having a teacher make you sit under a desk or stand in a trash can for ticcing.
-having to do years of therapy because your caretakers and teachers were insensitive to your needs and insisted on embarrassing you in front of family/classmates daily.

All of these things and MUCH MORE have happened to me, and I honestly can’t think of any other condition that a person could feel guilty for having other than Tourette’s Syndrome. It’s easy to lose count of how many times an authority figure tells (or tries to force) you to stop or calm down, not realizing that they are actually making the situation worse for the person with Tourette’s because of all the pressure they feel in trying not to embarrass the people around them. It’s hard to understand why our minds choose symptoms that are so embarrassing. It’s even harder for people that don’t have this condition to comprehend the fact that we don’t get to choose what symptoms we have and that we are always fighting our bodies every day to do things we would rather not do. There is so very little known about why we tic, why we tic until we are in pain, or hurt ourselves through tics.

It’s a complete nightmare to deal with insensitive people and people with so much lack of understanding. Sometimes their ignorance can be downright shocking. Everybody needs a good reminder every once in a while that people that have Tourette’s Syndrome didn’t ask for it. One more thing: Accepting a friend or loved one’s Tourette’s and being educated on this condition empowers you to stand with that person and support them when somebody out in public is being ignorant. #FeelTheTeel #TourettesSyndromeAwareness

If you know anyone with TS, please educate yourself on the disability and understand that a physical manifestation of Tourette’s is not behavioral.  It is neurological.  It may appear behavioral, but more than often it is not.  It would be like asking a paralyzed person to stand up.  It isn’t going to happen.

My son has TS, and in honor of him and all those who have TS, you will always be heroes in my book.  While all the above has not happened to my son, enough of it has.  It is in his name that I dedicate the entirety of this blog and every word I write has its origins in his own struggles with having a disability and his journey through Delaware education.

Delaware House Recognizes Tourette Syndrome Awareness Month 2016

For the second year in a row, the Delaware House of Representatives recognized Tourette Syndrome Awareness Month, which takes place from May 15th-June 15th, 2016.  My son Jacob and I attended the legislative session where State Representatives Debra Heffernan and Jeff Spiegelman introduced the legislation.  The House unanimously voted in favor of House Resolution #33.

Above, Kevin and Jacob in picture taken by Delaware State Rep. Kim Williams.
Below, the House Resolution.

Thank you, once again, to State Reps. Heffernan and Spiegelman for this honor for a very misunderstood and confusing disability. And thank you as well to Susan Breakie, the Delaware Tourette Association of America Chapter Leader to inviting Jacob and I to this momentous day!

Jacob got to meet a lot of legislators and even got a lollipop from State Rep. Michael Ramone! Unfortunately, we were not able to meet with Governor Markell this year or get to play with Speaker of the House Pete Schwartzkopf’s gavel.

On Saturday, the Delaware Tourette Association of America will be holding the Delaware Tourette Awareness Walk at Glasgow Regional Park in Glasgow, DE:

The Delaware Tourette Awareness Walk in Glasgow Regional Park was organized to raise awareness and funds for the Tourette Association of America. When you register for the Delaware Tourette Awareness Walk you are supporting the Tourette Association’s mission to make life better for all people affected by Tourette and Tic Disorders! Encourage your friends, family, co-worker’s and neighbors to donate on your fundraising webpage so that we can reach the team’s collective fundraising goal! The funds raised will benefit research, foster awareness, and support necessary programs.Together we can make a difference!

Registration Fees
•Early Bird Registration (Age 13+/Adult) — \$25
•Day of Event Registration (Age 13+/Adult) — \$35
•Children age 6-12 — \$15
•Free for Children 5 and younger

Online Registration is Recommended. Online Registration closes at noon on Thursday May 12th, 2016.

Each participant will receive a Team Tourette T-Shirt in the size of their choice and a Team Tourette medal. There will be free food, drinks, and fun for the entire family!

Event Time/Date

Check-in/Day-of registration will begin at 9:00 a.m. and the walk will begin at 10:00 a.m. on Saturday, May 14th 2016.

Event Location

Glasgow Regional State Park

Rt 896 & Rt 40, Newark DE 19720

Stand Up For Tourette Syndrome

This is an excellent video about what children with Tourette Syndrome go through in classrooms, the cafeteria, the school bus, and recess.  The key to Tourette Syndrome, along with many other disabilities, is understanding and acceptance and not just with their fellow students but also the staff at school.  Most people don’t make fun of someone in a wheelchair, and many disabilities are no different.  They are disabilities with neurological symptoms, meaning kids with these types of disabilities can’t help it.  They can learn to live with it, and adapt, but society and peers play a large role.  A lack of understanding causes tremendous stress and even a casual throwaway comment about a tic or something a child cannot control can play a big factor in their ability to adapt and accept their own disorder.

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!

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.

Tourette Syndrome Awareness Month Begins TODAY!!!!

Tourette Syndrome Awareness Month begins today, May 15th, and runs through June 15th.  In support of those with Tourette Syndrome, please wear teal on Tuesdays during TS Awareness Month!  The Tourette Syndrome Association of America has renamed itself The Tourette Association of America.  With a new website and a new logo, TAA is looking to bring massive awareness of this disability to America!  As of May 22nd, http://tourette.org will be the new website, replacing http://www.tsa-usa.org/index.html.

In Delaware, the awareness month was honored yesterday by the Delaware 148th General Assembly when both the State House of Representatives and Senate unanimously passed House Concurrent Resolution #36, recognizing the awareness month.  Tomorrow, in Glasgow Park in Newark, DE, there will be a TS Walk in honor of Tourette Syndrome Awareness Month, beginning at 10:00am.

For students with Tourette Syndrome in Delaware, the call for awareness and acceptance has never been greater.  As a father of a child with TS, it can be very tough for our kids.  Acceptance and understanding can be difficult.  For those who happen to see a child ticcing, or maybe even making noises, try to understand these children can not help it.  And drawing attention to tics usually result in greater stress for the child, which only increases the tics.  Children with TS are just like any other kid, they just happen to have something others don’t.

Tourette Syndrome Awareness Month Recognized By Delaware In House Concurrent Resolution 36

Today, the Delaware House of Representatives voted unanimously to pass House Concurrent Resolution #36, which recognizes Tourette Syndrome Awareness Month, running from May 15th to June 15th in Delaware. Sponsored by State Reps Debra Heffernan and Jeffrey Spiegelman, this is the first resolution of its kind for Tourette Syndrome in Delaware.

The Chairpersons of the Delaware Tourette Syndrome Association, Susan Breakie and Pam Levin, both gave stirring and moving speeches about Tourette Syndrome and the discrimination and bullying that occurs in schools for TS students. Levin gave examples of situations TS kids and adults have to endure, such as “stop moving around and do your work in the hallway” when a student is ticcing, or an adult with TS being rejected from a job opportunity based on their disability. Breakie stressed there needs to be more awareness and acceptance of Tourette Syndrome to break the stereotypes concerning the “swearing” disease, and how it is a neurological and neurobiological disease with no cure.

A few children with Tourette Syndrome attended the event, and after the legislative session, they got to meet Governor Jack Markell and received Delaware pins from the Governor. It was a highlight for many of the attendees year to have this very unique and once in a lifetime opportunity!

Especially for this blogger!

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:

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.

The Leftovers

Last summer I watched a new series on HBO called The Leftovers.  The basic premise of the show was 10% of the world’s populace up and disappears.  Gone.  The survivors, those you left behind, must try to understand this new world and mourn for their losses.  Many assume this is the Biblical Rapture, foretold in the Book of Revelations.

It got me thinking about what would happen if this occurred in the real world.  Current world estimates are that about 10% of the world is disabled in some sort of way.  Not that I would ever want 10% of the world to disappear, but imagine if it was all the disabled of this world, finally at peace.  These are deep, and what some would say, morbid thoughts.  But I am a parent of a special needs child, and I pray every day for an end to his suffering, emotional and physical.  I want him to have the best life possible.

Tourette Syndrome is a wax and wane type of thing, with no predictability whatsoever.  Sometimes my son knows when he is ticcing, and sometimes he is blissfully oblivious.  Lately those tics have been fierce and loud.  And he knows it. I’m not sure if it’s cause of the concussion he’s been healing from, or if this would have been the natural progression of events.  But he’s in pain, and I can see it in his eyes.  He feels like the rug got pulled out from underneath him, and he doesn’t like it.  How do I tell him to keep hoping, to believe things will get better, when he can only see what’s right in front of him?  These are hard times for him, and I hope there is another side to this he will come out of soon.

I read a book about twenty years ago called Embraced By The Light.  It’s about a woman who has a near-death experience and sees angels and heaven.  She talks to God, and he tells her those who suffer the most on this world actually chose that path before they came here.  I don’t know if this is true or not, but it comforts me in an odd sort of way.  I have to keep hoping, because the opposite, it’s not a fun place.

My Son’s Invisible Enemy

In my son’s brain are lots of neurons and electrons, doing their thing.  For children with Tourette Syndrome, like my son, the messages sent to his body can say some pretty funky things.  Instead of pay attention in class, those messages might say hum with a squeaky noise, or make an odd smile with your lips.  Sometimes those messages can remember something someone else said, and they make my son repeat it over and over.  This is his life.  This is his world.  I can imagine it, and empathize with him, but I will never be able to truly understand.

Last week, he had that humming and squeaking tic.  It lasted for three days- morning, noon and night.  By the end of the 2nd night, we were hanging out, and he started screaming.  He couldn’t stand the tic anymore and he wanted it gone.  But this reaction made it worse.  Sometimes the more you try to stop it, the worse it gets.  He started to bang his head with his hand, as if he could just knock it out of his head.  It was one of the darker moments I’ve seen where a tic just completely took over and rendered him in absolute helplessness.  Eventually he fell asleep and I said a prayer for my little warrior.  I would trade places with him in a heartbeat if I could.

Tourette Syndrome (TS) is not a common disability.  If there is more than one person in a school with it, that’s a lot.  It is very difficult for someone who doesn’t live with it to understand.  I’ve heard a lot of folks say “I understand, I had a child with ADHD.”  While I appreciate the sympathy, it is very disconcerting.  For comparisons sake, it would be like telling someone in a wheelchair “I understand, I had a sprained ankle once.”  I’m not saying this to be offensive, but it needs to be said.

My son is beginning to advocate for himself, but he is at the very beginning.  He doesn’t know all the right ways to do this without offending others.  It’s a steep learning curve.  I feel comfortable he will get there eventually.  But in the meantime, I have to understand that he needs me more than ever.  To help teach him the right paths to take.  Sometime I feel like it’s a lesson in futility, but then he takes my advice on something and tries it out, and it works.  These are the small victories that I will take any day of the week.

The good days are great, but the bad days can be really bad.  Any parent with a TS child knows this.  The best we can do is love our child even more, and be there when they need that hug or a listening ear.  I’m looking at my child now, and I am filled with such a sense of gratitude that right now, he is content with the world.  That can change in a minute, an hour, or any time.  The trick for him will be learning how to deal with this invisible enemy.  To suppress or not suppress is the question he deals with daily.  Most times he couldn’t suppress them even if he wanted to.  But he is my son, and I love him no matter what.

This is who he is- a ten year old boy with his whole life ahead of him.  He has some stumbling blocks most kids don’t have.  But he also has a compassion inside of him, and he feels things so deeply.  He’s an amazing kid, and I think the best thing I can do is not worry so much and stop trying to fix everything for him.  I ponder on the what ifs way too often.  My biggest wish is for people to see him like I see him.  But he’s still not taking the Smarter Balanced Assessment!