When my son was about 5 years old, he was asked to draw a picture for the Tourette Syndrome Association poster contest. I will never forget it! He took a sheet of poster board and drew a line across it dividing it in half horizontally, in the top half he drew himself showing motion lines above his shoulders and wrists and at the sides of his neck. ((( ))) Similar to these parentheses around his wrists for example, trying to convey the message of movement! In the lower half he drew a dog scratching his neck and fleas jumping off of the dog. The Caption under the pictures was " I May have "tics" but at least I don't have fleas!." The poster was proudly displayed as a winning poster. I thought then what a healthy outlook he had at that age. If other people could just look at him the same way!

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Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.

Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking.  Simple vocalizations might include repetitive throat-clearing, sniffing, or grunting sounds. Complex tics are distinct, coordinated patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting. Simple vocal tics may include throat-clearing, sniffing/snorting, grunting, or barking. More complex vocal tics include words or phrases.  Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself in the face or vocal tics including coprolalia (uttering swear words) or echolalia (repeating the words or phrases of others). Some tics are preceded by an urge or sensation in the affected muscle group, commonly called a premonitory urge. Some with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the sensation.

That son is now 26 years old. I have learned a lot about Tourette Syndrome since those early years. Not just the Medical Journal jargon either. I have learned what it is like to watch it steal children's lives away from them a little at a time, without being able to stop it. My younger son was diagnosed just a few short years later. He is now 23 years old.

Tourette's Syndrome is not just a movement disorder. Anyone can see that! But what most people do not see is the Chronic Depression, Anxiety, Panic Attacks, Attention Deficit Disorder, Attention Deficit Hyperactive Disorder, Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder, Rage Disorder, Autism (Spectrum) that most often accompany the disorder.

It is so difficult to raise children with these disorders to have any resemblance of a "normal" adult life without running into negative judgement from family members, friends, strangers and yes, even physicians and psychiatrists. No one agrees on one treatment, one kind of discipline, or one kind of education. Everyone has their opinion though! I can guarantee that no matter what you do, you will irritate somebody! I am still hearing it today!

My oldest son is on disability. He was in the regular school system (with a few adjustments) until High School. His worst experience being yelled at by a teacher who yelled, "be still, quit moving around in your seat, your disturbing the class." This happened to him in the 3rd grade. I got a phone call from the office to come and pick him up. I found him under his desk crying! He had been humiliated! He could not be still and the teacher had been informed all about his disorder. He never went back to her classroom. I then had him put on home schooling for a while. He finished at the local High School Extension School and graduated Valedictorian. His IQ is wonderfully high and that is not the problem. Each time he has tried to go to College he has had to drop out due to problems associated with his illness. He had a rage on campus one day and Security had to escort him off. I had to intervene and explain about Tourette's Syndrome "rages" or he would have ended up in jail. He and his Professor argued one day because he proved the Professor wrong, he said he tried to keep his mouth shut but "he couldn't". If you know anything about Tourette's Syndrome and OCD you will understand he really could not keep quiet! He got tossed out of class and asked not to come back. That is just one example! He has tried to work. He tried fast food, which made him physically ill since he has "texture" problems with the OCD. He couldn't touch the food. He couldn't clean up after people. He took more medication to try and control it and he fell asleep at a table on the job. Well, that didn't work. He tried janitorial work along with a group of other disabled people. That did not work out well either. Within a week, he was "sick to his stomach" every day. He said he could not handle the stress. His ulcer was active again!

The problem is, since he can play RPG's (role playing games) with a group of friends and play computer or game system games--I am constantly told by family and friends. There is nothing wrong with him. If he can do that, he can work! He should not be on disability. He is 26 years old and lives in a world surrounded by games and semi-functions almost entirely within them! And they think he is FINE! I see a big problem. If this were his only problem I would say his OCD is way out of control! He still has horrible uncontrollable body movements, chronic depression, his stomach hurts all the time, his joints hurt all the time. He can not sleep until he nearly passes out sometimes after days of being awake, because while lying there trying to sleep he hears voices telling him "bad things". I think sometimes people are blind and deaf! They see only what they choose to see.

My 23 year old has been fired or laid off of every job he has had. Which is about 8 over the last 3 years. He does not have a problem going to work. He has a problem keeping the job. He has severe anxiety, panic attacks, chronic depression, and Bi-polar Disorder and he throws up a lot when these hit him! He also has night terrors and hardly sleeps at all at night. Most of his jobs have been in the fast food industry. Needless to say, they don't like it when you spend a lot of time throwing up! If they keep him and try to work with his condition, when cuts have to be made, he is one of the first to go! He has tried to go to college and he too had to drop out. His problem was panic attacks during class. I even tried attending with him. He too went to regular school with a few modifications. He had a teacher hit him with a ruler in the 3rd grade. He was not a model student by any means. He was disruptive. But she had no right to hit him. He was taken out of her class. I put him on home schooling when he entered High School and with one on one teaching he graduated a year early with a 4.0. You just have to keep his attention! He has a wonderful brain. He simply can not seem to make it function properly thanks to the Tourette's Syndrome Spectrum disorders he has. His "tic's" are very mild but can definitely be seen when he sleeps. He is the subject of much heated family debate! I know he is not lazy, he has taken martial arts in many forms and holds high belts in many forms. He would love to find a job and be able to keep it. He is not looking for "easy money". He is waiting to see if he is able to get disability because he can not find a job and keep it. His resume is not that great! In the mean time. My husband and I are supporting him. Which I do not see a problem with, as long as he is actively doing anything he can to help himself.

A person's disability is not always evident by just looking at them. This is what I want people to know. I want them to understand that Neuro-Psycho-Emotional Disabilities are just as debilitating as someone who has Cerebral Palsy or is a Quadriplegic. Society should hold their judgement when it comes to people with these types of disabilities. A non-functioning person in society already holds a stigma attached to them which is bad enough without people rushing to judgement in err. No one judges a person who is blind, deaf, mute, or crippled. So why should someone with a Neuro-Psycho-Emotional Disability be judged? All that does is make life harder for them and their family.

I get so angry and hurt when people start talking my children down. They have not walked in their shoes. Lived their lives of mental and physical illness with its exhausting physicians, hospitals, counselors, medications, group therapies, support groups, etc... the criticism is so unfair. I would like to see, just one of them, live through what either of my boys have lived through in their short lives so far and see if they would be doing any better.

It is so easy to look at someone, or a situation from the outside and judge it. But it is hard being the one who has lived it and trying to make people understand the gravity of the situation. Some people are just pigheaded and don't want to really listen and learn so their minds can be changed with the knowledge they gain. Others welcome the truth. I thank God for those people who a willing to learn about disabilities, especially those disabilities that are hard to see.

If my children have taught me anything it is to have an open mind and heart and not to judge a person or situation without all the facts!