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.