The following is the beginning of a series of entries that, as a whole, comprise a paper titled “Tourette Syndrome: Coping With Difference” I wrote for a class I am taking at the University of Texas-San Antonio.
“It has been said that time heals all wounds. I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
— Rose Kennedy (“The Kennedy Legacy, n.d.)
I was barely out of diapers when I first realized my family was different. My parents were going through a divorce and my mother would soon become only a distant memory. My dad would eventually remarry, but no one could ever take the place of having my own mother. It hurt to be without my mother, but being a small child, I was able to bounce back fairly quickly.
The first few years of my life, other than missing my mom, I was virtually unscathed by the differences between myself and those around me. Then I became school age and over the years my image of myself began to change due to how others chose to view me.
I remember being in kindergarten and wetting my pants at school. I recall the other children laughing and pointing at the “baby who wet her pants”. That was my first lesson in humiliation. It was the first time I can remember being made fun of and I can still feel that sting, the burning in my gut, and the tears welling up in my eyes as my peers continued to laugh.
By the time I was leaving grade school I had already been labeled the fat kid by my peers and even some of my own family simply because I was a little heavier than the norm. When I was 12, my dad divorced my stepmother after 8 years of marriage.
Although I wasn’t particularly fond of their marriage in the first place, the stress that comes with such a sudden and drastic change only damaged my already brittle self-esteem that had taken a downward spiral over my obsession with my weight. For many years I was told that I was fat and no matter how hard I tried to do the whole “you’re better than those hurtful words” the pain was stronger than my resistance.
To this day, my weight is one of the few things that can send me into immediate panic mode. I am not proud of the fact that I took drastic measures to lose the fat kid label but that part of my life would take up much more writing space than I care to discuss.
Eventually I shifted into near withdrawn mode. I no longer made friends with ease, and the friends I did have were considered social outcasts as well. We didn’t deserve to be labeled, but deserving of anything was rare in our reality.
From junior high to high school, it didn’t matter if I felt good about myself at the beginning of the day because by the end of the day I wanted to crawl into the nearest hole and never come out. To my peers I was poor and poor equaled “you can’t talk to me because I am above you”.
High school was the ultimate hell and even teachers ignored my pleas for help because “I would never get it” and I was destined to be “another girl who stayed in town and popped out kids”. The day after graduation I took the first ride out of that small town and I never looked back. I refused to prove them right. I refused to stay in a place that would only land me on the front page of small town gossip because I would not conform to the way somebody else expected me to be.
Leaving town should have sent me on a one-way ticket to cloud nine, but as history would have it, the dreaded label also refused to stay behind in that small town. I was an eighteen-year old who was very uneducated about the reality of just how cruel the world could be. With very few options I chose to join the military.
I was only in the military for a year before I was labeled the weird girl. Weird because I was shy and was prudish in almost every way possible. Determined to lose the labels, I decided I needed to be someone different. I drank too much, I partied too much, and the hours I spent being the perfect airman were all but lost and forgotten.
The more I changed, the more I hated and despised myself for not being better. I left the military after five years to pursue an education and re-invent myself as yet again someone different. I was newly married and ready for a fresh start when I found out I was pregnant. Although my husband and I had only been married for a short few months, we were thrilled about the idea of becoming first time parents.
Then the unexpected happened: our son came nearly three months early and the doctors gave him just two weeks to live. Pity became the new label. Everyone looked at me as being weak and they were right. I was weak and I was broken because my child was struggling to survive, but thank God our devastation was short lived.
Jacob not only survived, he proved to the world that amazing strength comes in many different forms and sizes. He grew, he progressed, and he overcame every single obstacle that had threatened his life. I was nearly 30 years old before I finally accepted the person I had become and the person I knew I could be.
Through struggles and hardships, needles and doctor visits, Jacob taught me the power of having faith and believing that we can all heal despite the damage to our bodies and our souls. Seeing him progress and starting school gave me the direction I needed in order for me to finally know who I wanted to be. When Jacob turned 5 I returned to school and decided to major in special education.
Jacob had been diagnosed as being developmentally behind his peers and required regular speech, occupational and physical therapy. He has always taken everything in stride and has, for the most part, stayed happy and calm. This year he started the fifth grade and slowly his demeanor has begun to change.
For the first time, he is starting to realize just how much he is unlike his peers. The one thing that makes Jacob stand out the most is that he has Tourette Syndrome (TS) and his physical and vocal tics are not something that can be hidden from the world, although I feel they should not have to be.
My goals and my focus have become centered on the evolution of Jacob’s thoughts and ideas, mainly his view on the way he sees himself and how other people’s views will affect the way he sees himself. It’s only been a little over a year since Jacob was officially diagnosed and I have realized how very little I understand about Tourette Syndrome.
How can I teach him to cope with a condition that I cannot relate to? What can I do to make sure that he can overcome any obstacle and make it through his school years as unscathed as possible? Are there other individuals that he can relate to and will their coping skills work for him? Where can I find others with TS who are willing to share their stories?
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