3/26/2006

Different

I was reading this post at ArmyWifeToddlerMom and it has given me the courage to speak about raising my son who has Tourette's Syndrome. My fear is that our struggles will be ridiculed.

Tourette's Syndrome has many symptoms, the most famous being those who shout out profanities. My son's Tourettes is not like that. His is a combination of head and shoulder movements with vocalizations, usually in the form of humming, throat clearing, and others.

His is very subtle and does not interfere too much. But when he was going to school, there were trips to the principals office and conferences with teachers while he was in elementary school. Sometimes his movements would involve touching others on places like shoulders and so I would have to teach him to direct it another way. I did not try to suppress it, just taught him to touch the wall.

The neurologist who diagnosed him recommended Haldol. I choose not to go this route. He was only 6 years old when diagnosed and I did not feel it was appropriate for him to be taking such a strong drug.

The one thing that used to bring me to his school often was the periods when he would mimic his teachers ceaselessly. Yes, that is a symptom of Tourettes. I'm not talking about a few minutes here and there. I'm talking minute after minute, day after day. He would do the same to me. He was very good at it too! He had the voices and mannerisms of his teachers and me down pat!

The hardest thing was the realization that the parents of his classmates did not want their children to associate with him. How do you prepare your child for something like that? I taught him that he was a child of G-d. That there was no one else on earth like him and he was unique. He reveled in it. He was in the advanced learning classes and should have been in the gifted students program. In his 6th grade English class, he had to write an essay about himself.

His teacher pointed it out to me during the school's open house. In it, he wrote how it was good to be different. For him, standing out was a gift. I marvel at his courage. He still faces many hurdles and yet he faces each one with a grace and dignity that is awesome to see.

Sometimes, the Tourettes will disappear in a child's teenage years. His still remains with him. But he works through it. He has a good job, friends, a girlfriend, and hopefully soon will be going to college. He still likes being different.

The hardest thing I had to deal with was guiding him and teaching him how to handle rejection. That was the most painful thing of all. When kids are different and stand out, people generally try to avoid them. There was a lot of frustration and pain through the years because of this.

I am humbled by the way he has matured and overcome the obstacles in his way because of the Tourettes. Sometimes I forget to tell him. I just know he has the courage of a lion and I'm humbled that G-d gave me such a child to raise. It has it's drawbacks but the rewards far outweigh all. His brightness, his unique views, his sense of humor, and his mischievousness are all gifts that I'm honored to see on a daily basis.

When something goes awry in a persons brain, it is often classified as a mental illness. There is such bad connotations with a label like that. There is some speculation that Tourette's and other mental disorders such as depression are the result of viruses that affect RNA. One likely candidate isBorna viruses. There is so much that needs to be learned about what are classified as mental illnesses. If these illnesses are the result of viral infections, should they even be classified as mental illness? I don't think so. More and more studies are coming to light that mental illnesses are biological in character and not necessarily the result of some supposed deficiency in one's character.

The more people that know about these studies, the better the understanding of those like my son who suffer from Tourettes and people like me who suffer from clinical depression.

I originally posted this on Friday. I have made a few clarifications about the nature of my son's dis-ease and added some studies on some of the causes. I had researched Tourettes thoroughly when my son was diagnosed and 15 years ago, there was only one study linking Borna virus and viral infections to Tourettes, depression and others. It's good to know that more and more studies are being done that shows the links between viral infections and brain disorders. Perhaps, in time because of research such as this, the stigma of such afflictions will fall by the wayside.

Don Surber linked with Short Arm, Big Heart

Pyjamas Media linked.

4 Comments:

Blogger Deadman said...

Wow. You have had a lot to deal with, but it sounds like you have done a wonderful job.

7:54 PM  
Anonymous Anonymous said...

mark,

I hope I have done a good job.

8:07 PM  
Blogger Rachelle Jones said...

this was informative and touching, and I am glad you "came out of the closet" to the blog readers......

7:22 AM  
Anonymous Anonymous said...

AW,

Thank you. I guess in a way I'm still trying to protect him. I don't think parents ever outgrow that instinct.

10:26 AM  

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