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.

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