“Tourette Syndrome: Coping With Difference” — Perspectives

The following is part 5 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.

Read part 1 here.
Read part 2 here.
Read part 3 here.
Read part 4 here.

Two women who shared their children’s stories with me told me that their husbands had not been diagnosed until their children had been diagnosed. Karen’s husband was 42 at diagnosis and Tanya’s husband was 38. I wondered about how both husbands dealt with this disorder growing up, not realizing that there was a name for their behaviors.

Karen didn’t have much of her husband’s history to share, but Tanya’s husband had been misdiagnosed since he was 4 years old. For many years he was treated for seizures until two of their five children were diagnosed with TS. Her two sons and her husband William were all diagnosed within just a few years of one another, with not only TS but Asperger’s as well (Tanya Lackey, personal communication, November 2012).

It was quite difficult for me to gain a better picture of what the historical implications were for the older individuals with Tourette. Lorenzo had been the only one to share his full story with me. Three other adults, much older than Lorenzo and in their 70s, were only willing to give me their symptoms and didn’t want to share much else. I imagine their stories were much more painful than the rest of the stories.

When someone is ridiculed for a condition that is beyond their control, it’s sad and unacceptable. When someone is ridiculed during a time that such conditions were treated as an atrocity and a “sickness”, it moves beyond sad…it’s deplorable.

The educational perspective is merely an extension of the historical perspective. Before TS was first introduced as a medical condition, what were the implications for students who displayed the symptoms and tics during instruction? What will the educational implications for Jacob be?

Awareness is the key to every condition and I can think of quite a few conditions that exist with our children will go misunderstand in the educational system. How many students with autism are unfairly labeled as having behavioral problems? An entire inquiry paper could probably be written from that one question.

The same goes for children with Tourette. Before Jacob was diagnosed, the number one complaint from his teachers was his inability to focus and pay attention. Doctors continued to tell me it was ADHD and one even pleaded with me to put Jacob on Ritalin. It was obvious that some of his teachers “secretly” hoped that I would take this doctor’s recommendation.

Inclusion is one of my biggest concerns for Jacob. I remember being told by one of my teachers during practicum that our kids are lucky to be integrated into the general education classrooms. She had remembered a time not long ago that children with disabilities were still separated, making their difference that much more apparent.

According to the United States Census Bureau (2011), 5.2 percent of noninstitutionalized school-aged children were reported to have a disability in 2010. Traditionally these children were placed in special classrooms and were not given the opportunity to learn within the general education classroom.

This segregated environment did not give those students the same access to the state-wide curriculum and it left these children alienated from their same-aged peers. In recent years there has been a monumental shift and a new paradigm to the way children receiving special education should be integrated into the general education classroom.

Approximately 3 percent of students within the general education classrooms may have TS (Packer, 2012). Mainstreaming seems to be the ideal environment although children with disabilities have been subjected to harassment and negative reactions to their difference. These negative reactions come from, not only their peers, but teachers who feel they are not equipped to teach a child that learns “differently”.

There is no solid statistical information for students who feel they are treated unfairly due to Tourette and other disabilities. While there are statistics for bullying, not everyone is willing to step forward and admit the cruel harassment that they have been subjected to.

Bullying is on the rise and all the anti-bullying campaigns in the world will not eradicate the problem. The solution relies on an individual’s ability to be resilient and find a coping mechanism for their disability and/or difference. Jacob will always be labeled for his disability but the battle he will have to confront is the battle within himself, the fight to see himself beyond his disability, beyond the label.

After watching I Have Tourettes But Tourettes Doesn’t Have Me, I am more terrified of what the implications will be for Jacob as he transitions to middle school next year. These children have all endured the taunting of their peers. One young man, Seth, says that “it’s not your own opinion that matters, it’s the opinions of others that really affect you.” (I Have Tourettes but Tourettes Doesn’t Have Me, 2005)

As of now, Jacob isn’t tremendously bothered by the words of others, but I do worry that he cares more than he is willing to tell me. It’s funny how a 27-minute documentary was able to move me more than all of the information I gathered combined.

I think the reasoning for my reaction is that I saw Jacob in each of these children. I saw his physical self and the way he speaks when talking about his peers. In Kathryn  Polansky’s article Identity, Subjectivity, and Self (n.d.)she goes on an exploration of self as the embodied self, the social self, the discursive self, and the self as an agent. Polansky (n.d.) states that:

“Research in social theory and self identity supports the concept of identity as a dynamic notion that can be more fully understood by approaching the individual as a complex and changing person.”

Theoretically, it will be a combination of many forces or “selves” that impact Jacob’s being, but it so far it is the educational frustrations that have created a need for his coping skills.

My last perspective is the one that gives true substance to my inquiry; the psychological perspective. The psychological perspective delves into that “inner” feelings part, the emotional perspective of having Tourette. Polansky’s article fits nicely into this perspective as it is the perspective of finding the part of Jacob that lies within having the TS diagnosis.

From a parent’s point-of-view it’s fairly easy to distinguish between Jacob’s moods each day. I can tell when he’s had a bad day or when he’s excited because something good happened or is going to happen. The part that drives me the craziest is not knowing how to relate these feelings to his tics.

The more troubling part is that Jacob doesn’t have the awareness of how much his tics affect his attitude. For example, if he is having a day where his tics go on throughout the day, he will be more tired and cranky. He hasn’t put those connections together, but I have no doubt that he will in the near future. That is where I worry, that is point at which he will need those coping skills. Where do they come from? Will the severity of his tics affect the amount of coping skills he will require?

As I prepared the watch the two films I selected, I re-watched the footage I had of Jacob having tics. I wanted to be able to connect their movements, their demeanor, and their attitudes with Jacob’s tics and attitudes. Watching Cohen’s movie based on his book did exactly the opposite of what was intended.

I had found helpful information from his book but seeing it in film form took me away from the physical aspects completely. His determination was inspiring but his demeanor, or the actor’s demeanor, played out a very sunny disposition. I didn’t really get a sense of his “inner” self as much as I would have liked. His book explains how it felt to be frustrated yet everything in his life seemed to play out almost “too” nicely in the film.

Polansky’s article on self is mainly what drew me to this perspective. I wanted to know how individuals with Tourette felt about themselves with TS and without TS. “Joe Smith” was the first to share her story. The interesting fact about Joe is that she is 18 and she was diagnosed with TS at 17. The onset of her tics began at the age of 15 and have continued to progress from yawning to a variety of others from snapping to “whooping”.

Like most of the other stories, and unlike Jacob’s story, Joe has also been diagnosed with Obsessive Compulsive Disorder (OCD). I imagined that being sort of new to the Tourette community that Joe might have trouble dealing with her symptoms, but that wasn’t the case:

“I don’t resent my diagnosis, it is part of who I am. I let my friends make fun of it because I love seeing them smile as they exploit my excessive dopamine levels.” (Joe Smith, personal communication, October 2012).

I found the philosophy interesting and although I don’t want people making fun of Jacob, it inspired me to somewhat “loosen up” on the part of me that gets angry with people’s remarks. For the first time I realized that maybe I care more about what people say than Jacob really does (“Joe Smith”, personal communication, October 2012)

Lorenzo was the second person to reply. I cannot comment enough about this remarkable man. I’m not sure what part of his story inspired me the most. His was the story that gave me a real look into the mind of someone with TS. He wasn’t new to Tourette and he wasn’t sharing another’s story. He lived it. It was hard not to shed tears as I thought about how lonely he must have been to get no support from those around him. He was simply alone in his struggle until his wife pushed him to get help. After reading his story I was left wondering about the following line:

“Tourette Syndrome is not life-threatening, but it can be living threatening. What I mean by this is that it can hinder you from living to your full potential.” (Lorenzo, personal communication, October 2012)

Wondering is actually an underestimate; I was taken aback by the brutal honesty. Lorenzo’s life had been altered for many years by the ignorance of others. (Lorenzo, personal communication, October 2012) After reading his story several times, I wanted to hug his wife because I was so thankful that she urged him to seek help. His coping skills come from the support of those around him and it made me see how important our family is going to be to keep Jacob grounded and confident.

Karen S. was the response that had my emotions twisted in many ways. Her son Nic and her husband had both been diagnosed with TS. Karen was my first parent perspective and I noticed that as I read her story that I kept thinking “Me too!” Her perspective mirrored my own until she mentioned that Nic has autism (PDD-NOS) as well.

We have never walked in those shoes and without trying to sound uncompassionate, I’m happy that we haven’t. Mentally I’m not good enough to fill such large shoes. Karen is, without a doubt, the strongest person I have never met in person.

She spoke about the TS and Asperger’s together and said “Some of his TS symptoms cancel out the PDD and some of the PDD cancels out the TS. If there can be a “good” mix, this appears to be it and we are grateful. He could be a lot worse.” (Karen Smith, personal communication, 2012).

Hearing that last part, “a lot worse” was, without a doubt, a very humbling outlook. Such a brave statement to say when life is so chaotic! Karen gave me six and a half pages of her story and I would love to share all six pages, but it’s hard to share something so personal and private without feeling that I’ve exploited some part of her that just needed to share her story with one person. I’m honored to have been this person and I truly hope that our friendship will continue to grow from this experience.

Amanda was the last story to go into great detail about her Tourette diagnosis. Her entire story relates her journey into become a youth ambassador for the Tourette Syndrome Association. This is her way of coping. She says:

“My method of coping is to take my disorder and use it to educate.”  (Amanda Silvers, personal communication, November 2012).

It doesn’t get much more inspiring than that! Amanda is the face of what TS education should look like. Our youth with TS shouldn’t feel as they should be in hiding. Education won’t always fix the problem, but even tiny changes makes for a better outcome for the TS community.

In the essay Of Our Spiritual Strivings by W.E.B. DuBois (1903), he explains the plight of the black man after emancipation. Should a black man pay only respect to his culture or should he strive to be an American black man? Can he be both?

As I read his essay, I was able to find a small likeness to the community of those with disabilities. Should Jacob be the face of Tourette Syndrome or just be Jacob the 11-year-old boy? Can he be both? I’m not so sure this inquiry did its intended purpose of helping me to find all the answers I was looking for. What it did help find is that Jacob will have to be the one to choose which position to take. He can be both, but it will ultimately be his decision to be either just Jacob or just Jacob with Tourette. I prefer just him being Jacob, the little guy that makes his mother so overwhelmed with pride.

Read more from me on my Embracing Difference page on Facebook.

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