In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD. Below is some basic information about Tourette Syndrome and a description of our experience with it. It also includes a description of some behaviors that are happening in our society and my opinion about them..
Tourette Syndrome (TS) is a neurological disorder that is misunderstood and has been stigmatized. The entertainment industry, whether it be television, radio or the internet, has been criticized for depicting those with Tourette Syndrome as social misfits whose only type of tic is coprolalia (a vocal tic consisting of swearing). The coprolalic symptoms of Tourette’s are also used for humor. To the public, this representation of TS has created an inaccurate perception about people with TS.
Take a moment, go to Twitter, and do a search on the word Tourette. The majority of the results that you will see are despicable. Individuals are pretending to have TS or accusing others of having TS and use it for an opportunity to swear in their tweets. There may also be the references to “Glenn Beck has Nazi Tourette’s.” The other common tweet has to do with the Tourette’s Guy, who has a website and has posted videos. Tourette’s Guys is a drunk, overweight man who claims he has Tourette Syndrome and spends his time video taping himself while he is philosophizing and swearing. Some allege he really does have Tourette Syndrome, and some don’t. Either way, I find him vulgar. There was a time when I would send tweets to these tweeple and explain how bad the disorder is. It is rather odd that a number of them responded by telling me off and then saying they had TS and could do what they wanted. I find it very hard to believe that a person with TS would make these type of comments that are in these tweets. I finally had to stop this confrontational tweeting because it just infuriated me, and put myself susceptible to a barrage of lewd comments from these tweeple.
Most recently, the lawyer of a woman, formerly known as the Hiccup Girl, may be using TS as a defense tactic for murder. The medical advisory board of the National Tourette Syndrome Association took issue with any defense based on the disorder. We also recently had a politician, Prime Minister David Cameron making a jibe user a tourettes reference.
The other hot topic with people with TS is the bullying that may occur. Bullying has recently become a hot topic in the U.S. due to some suicides that stemmed from bullying. Bullying doesn’t just happen to the smallest kid in the class. Bullies target those who seem to be less powerful or not as strong. Bullies also often target children who seem “different”. Children with TS and other disabilities are, therefore, at significantly higher risk of being bullied. All students have the right to attend school free of fear of harassment and bullying.
TS is recognized as a disability in the Individuals with Disabilities Education Act (IDEA). Disability harassment is discrimination that violates section 504 and its regulations. Under Section 504 and Title II, disability harassment in schools is defined as, “intimidation or abusive behavior toward a student based on disability that creates a hostile environment by interfering with or denying a student’s participation in or receipt of benefits, services, or opportunities in the institution’s program. Harassing conduct may take many forms, including verbal acts and name-calling, as well as nonverbal behavior, such as graphic and written statements, or conduct that is physically threatening, harmful, or humiliating.”
Check out Jaylen’s Challenge website, which is a grass-roots effort of a young man name Jaylen who has Tourette Syndrome and has made it his goal to reduce bullying for disabled children. Jaylen’s website, at http://www.jaylenschallenge.org/how-can-you-help, provides the following suggestions for how you can help with this cause:
- Donate as much as you can. Don’t forget, donations over $10 gets an exclusive ‘Bullying No Way!’ glow in the dark wristband.
- Spread the word about this cause. I am trying to change the world, one classroom at a time.
- Don’t bully people for ANY reason. When you bully someone, it is because you are insecure with yourself in some way. If you can’t help yourself, talk to a parent, a teacher, or another adult about receiving help.
- If you are a parent and you know your child “picks” on other kids, don’t laugh and think it’s merely “child’s play” or harmless. This is serious. Kids are losing their lives. Talk to your children, educate them. Let them watch my videos under the video links tab.
- Take up for someone when you see bullying. Just as I’m trying to do in a sense, ‘Pay It Forward’. Stick together. A bully will pick on an individual, but a bully will not bully 5 kids standing firm together.
- If you are getting bullied, you HAVE to tell someone. I know you don’t want to tattle and make it worse, but tell someone. Tell me and I will try my best to do an ‘in-service’ to your school if we have the funds available. The bully will never know it had anything to do with you.
- Come back to my website often. I am going to try to receive a strong rally of supporters in order to get help to children.
Jaylen is a very courageous young man and is a fighter for doing what is right. Take a moment and look at his website. You will learn more about TS and directly see how an individual lives with TS.
I think the portrayal of TS in the media is shameful. Having TS seems hopeless. The medical community haven’t made much success at improving the lives of those that have TS. For those like my son, each day is a struggle. I can’t count the number of days my son has come home from school crying because of events that happened with his peers. Even more so, there have been numerous times when someone called him “retarded” because of his TS. (Coincidently, Congress recently took action on the use of the word “retarded” and has removed its reference from all federal laws.)
Every time this happens it wounds my heart. Every day, I wish I had the power to take away this disorder from my son. I would rather carry that burden myself, than have him struggling day after day. Unfortunately I do not have that power to do this. Instead all I can do is help raise awareness about Tourette Syndrome and to continue looking for a cure. I know I am only one person, but I am slowly growing a village, and who knows where this may take us.
Tourette Syndrome and my son
Tourette Syndrome, school and despair