Tourette's Syndrome: Living with Tics

I know a little boy who was born with hair the color of the sun and eyes as blue as the sky. He has a gentle and kind nature and an apple shaped face. He never meets a stranger and always has a positive attitude. But, this wonderful and beautiful child lives with a secret; a secret so dark that no one knew about.

We teach our babies their ABC's and 123's, we teach our kids to be clean and neat, and when they do these things we think they are so cute and we're so proud of them. But what happens when the child you taught to count never stops counting? Or when he spills a drop of water on his shirt and he has to change it right then and there, or how his hands are so raw because he has washed them at least 50 times today? This is when it stops being cute. This is when they cry out for HELP!!!

Tourette Syndrome affects thousands of people everyday. In fact, the first patient is thought to be Marquise de Dampierre (1825), who was the oldest person to show symptoms for Tourette's. Now, one and six per thousand are thought to have Tourette Syndrome (ref. Mayo Clinic).

There are over 200,000 people in the world currently with Tourette's. Tourette syndrome (or Tourette Disorder) is a neurological disorder, which can be classified by tics (involuntary sudden movements and vocalizations), attention problems (which can be similar to those ADHD) and obsessive compulsiveness (which can be similar to OCD). (ref. Kids Health)

Tourette Syndrome is difficult to measure, because their symptoms (tics, attention, hyperactivity et al) vary from patient to patient, and can be severe or mild to the point where it is unnoticeable. It is so similar to other disorders such as ADHD (Attention Deficit Hyperactivity Disorder) and OCD (Obsessive Compulsions Disorder). While Tourette Syndrome does affect a child's attention, it does not affect the IQ of the Tourette Syndrome patient. The Tourette Syndrome patient can actually have an above average IQ and creativity level, although symptoms from Tourette Syndrome prove to be an obstacle for children. (Ref. Kids Health)

There are many social issues involved in treating a person with Tourette Syndrome. The most important stage of a Tourette Syndrome person is between the ages of 6-18 when the persons brain and personality are changing. It is important to elevate the person of as much stress as possible, as it is likely the biggest environmental cause to their expression of Tourette Syndrome. It is also important to give a lot of care, attention and love to the child, and build up their confidence as much as possible, as it is very hard to deal with the symptoms of Tourette's. (Ref. Mayo Clinic)

I am sure many of you, if not all, have heard the term 'Crack Baby" and while everyone knows that it means a child born to a mother who uses crack cocaine. It is also a term used for Tourette Syndrome children among the Department of Human Services. They call these kids "Crack Babies" or Crack Kids" because these are usually the kids that fall through the cracks of society and no wants them, and whoever does have them whether it be their parents, adoptive parents or the State they are 9 times out of 10 more likely to be physically or mentally abused or both.

Depression is also highly diagnosed with people of Tourette Syndrome. Doctor's and Psychiatrist claim that this is due to having to deal with the symptoms of Tourette Syndrome. Mayo Clinic) This may be true to an extent, but I am here to tell you that it is mostly due to our society. Our society is a mean and cruel place. You know, people expect kids to be mean and cruel to other kids even though it is not right, but it is a mighty sad world when it's the adults that are being mean and cruel to these kids.

If you have not guessed by now I have a son that was diagnosed with Tourette Syndrome when he was 6 years old. At the age of 9 Easter Seals said that he was the worst case of Tourette Syndrome they had ever seen. My son suffers from the "Tics", which he has the following; extremely severe stuttering, involuntary muscle jerking/spasms, chronic eye blinking, sensitivity (at times) to light and noise, and constantly making a sound in his throat (kind of like clearing his throat). My son also sufferers from depression, and while his Tourette Syndrome may contribute to his depression, I know that at least 75% of his depression is from our society.

Where is the proof you ask? Well I will give it to you. All through grade school he was made fun of by other kids for his severe stuttering and involuntary muscle spasms, now while at school the teachers would scold these children for doing this, but when we were at Wal-Mart, playgrounds, fairs, restaurants, or any other public place I watched as parents turned a deaf ear to their children's cruel words. Then in Junior High School the kids still gave my son a hard time making fun of him and things, but the teachers did nothing about it. So I had Easter Seals come into the school and teach them about Tourette Syndrome, but this made no impact on the students or teachers. When my son was in the 9^th grade he became extremely violent with uncontrollable rage. We had him admitted to Vista Mental Health Hospital to undergo treatment and therapy to help him learn how to control his rage. While there, the doctors learned some startling news about our school and community, which prompted them to launched an investigation that proved the allegations that my son and I told them where true. The doctors reported this through the appropriate channels and and investigator was called in from a neighboring county of the Department of Human Services. In their investigation they learned some of the following...

1. When my son would approach a teacher or faculty member to talk to or ask a question they would become impatient with him (due to his
severe stuttering) and they would say to him "Either spit it out or leave. I do not have all day for this."

2. They found that the devices that were suppose to used to help minimize his stress level was not being allowed. Like his alpha smart he used to type instead of writing cause he jerked so bad that his writing was not legible.

3. When he was unable to finish a task because he was light sensitive or sound sensitive he would be belittled by students as well as faculty.

4. Students calling him names for his stuttering and/or jerking, and some of the faculty doing the same. He was being treated like a freak of society.

5. Students and faculty telling him he will never graduate or amount to anything.

The list just goes on and on. So now I ask you if you had to live with Tourette Syndrome and with a society as described above would you not be depressed?

Children of Tourette Syndrome are just one class of people that get treated inhumanly. I think that it is a sad world we live in when you are judged for the color of your skin, your religious belief, your background, your financial situation, your educational level, or your medical/mental diagnoses/syndrome.

Oh by the way, my son is now 18 and will be graduating from this same school on May 17, 2007, and then he will be going on to college. My son never was a "Crack Child", my family never gave up on him, we've had him in counseling since he was 2 years old, and we have fought for him all the way, but we are not the hero's here, he his. He is and always will be my Hero. I could never do and incur all that he has, and still have such a positive loving nature. Most of our neighbors and most of the elder people in our community all love my son. They compliment on how good and honest he is, and on how he is always there lending a helping hand and never asking for nothing in return. And there is one more thing you need to know and that is he has lived his life without a father, because you see my son was conceived out of rape. So that is another barrier my son had to cross, but he came out a shinning star. So we say to all those who thought he was a trouble maker, a bothersome, and would never graduate or amount to anything.......Never judge a book by its cover, because you will be wrong every time!!!

Unfortunately right now, there is no cure to Tourette Syndrome, but they have made some medical breakthroughs with a new technique called "Deep Brain Stimulation", and he has an appointment with the University of Medical Science to see if he would be a good candidate. So please everyone wish him "Good Luck" !!