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While there have been great scientific advances made in the treatment of Tourette Syndrome, including better medications that target the most debilitating symptoms, many children suffering from this disorder must still deal with the daily onslaught of teasing and ridicule from their peers. People are often both intrigued and horrified when witnessing the stream of strange sounds and movements associated with TS. Educating the public can have tremendous value by lessening the stigma. However, all the education in the world provides little comfort to a child who comes home from school demoralized and defeated, not knowing how to best handle peer reaction ranging from curiosity at best to cruel taunting and ostracism at worst. Therapy can help children to respond more effectively to their peers. When children take charge of the situation, their sense of identity and resolve is strengthened resulting in a surge of self-esteem.
For all children, self-esteem stems from successfully mastering developmental challenges and taking new initiatives. This requires energy. However, children with TS must contend with both internal and external forces beyond the normal developmental challenges. They may expend endless amounts of energy not only suppressing their tics in the presence of others, but on struggling to develop a positive self image in the face of negative feedback from their environment. However, these children do not have to passively absorb such negative feedback. This is where the family can play a major role by helping the child to fight against those negative forces that threaten to undermine his stability.
Good therapy should be geared toward helping children and their families to view TS in a different light. Rather than seeing it as a "punishment" or a "handicap," it can be seen as an opportunity to tackle a difficult challenge, that when mastered, results in the development of a more solid sense of self. This hard-earned competence comes from knowing that the child has overcome a major personal life obstacle. Ultimately, it can fuel determination to succeed no matter what further obstacles lie ahead.
Although Tourette Syndrome poses major challenges to a child’s functioning, it can also serve to mask underlying conflicts in the family that may have lingered for years. Parents who seek treatment for a child with TS may become fixated on the child’s distressing symptoms while ignoring other significant issues. Therefore it is important for the therapist to carefully assess whether TS is indeed the main problem or whether it may be conveniently camouflaging painful conflicts in the family. If the latter is the case, then at the outset of treatment, the therapist must begin to sift through the complex family dynamics and determine where there are openings to make positive, new changes. The goal is to foster a gradual shift away from the exclusive focus on TS and toward a deeper understanding of how family members may be interacting in harmful and destructive ways. I have found that this often results in a reduction of TS symptoms as well as a strengthening of the family’s foundation.
One particular case comes to mind of an eleven-year-old girl I’ll call Lydia. Lydia had been recently diagnosed with TS, and was beginning to reckon with uncontrollable eye blinking and high pitched barking noises that escaped from her mouth during her classes at school. At those moments, tense laughter permeated the room and Lydia desperately wanted to disappear. She often found refuge in the girl’s bathroom where she would stare at herself in the mirror wondering why this awful thing was happening to her and not the other kids. Despite her winning, charming personality and careful attention to her appearance, Lydia began to see herself as a "total misfit".
Lydia’s mother had already read much literature on the topic and had a fairly good grasp on the fact that this was a neurological disorder in which the severity of the symptoms fluctuated over time. While she sincerely encouraged Lydia to overcome the negative effects of her condition by achieving new goals, part of her was mired in anger over seeing her daughter as being stuck with a condition that was out of her control.
The key word here is "control". We know that children cannot completely control their tics anymore than their parents can control all the hostile reactions from the world. However, this does not have to lead to the sense of helplessness and futility to which Lydia’s mother had become a prisoner. In sessions, while she intellectually spoke about the ways in which Lydia could better manage her TS, emotionally she was a wreck. She spent many sleepless nights imagining Lydia’s future; one dominated by frustration and hardship over all the unfair treatment that she would experience. She also had periods where she would lapse into self-pity thinking "why did this happen to my child?" This behavior of course is strikingly similar to what Lydia displayed in the girl’s bathroom at school.
Children model ways of functioning and coping from their parents. Unfortunately, some modeling can be destructive to a child’s well being. Once these destructive patterns have become firmly established, they can chip away at all the positive strides children with TS attempt to make to combat their condition. The therapist can help the family to identify and get a grip on these negative patterns and eliminate them from their repertoire of functioning.
On the one hand, Lydia’s mother made sure that Lydia was involved in extra-curricular activities. She never hesitated to drive Lydia to her music lessons and other activities and encourage her to stick with them. As a result, Lydia began standing out from her peers and winning competitions. Yet the problem was she was unable to experience the full glory of these accomplishments because of the self-defeating behavior she had adopted from her mother. This left her vulnerable to outside attacks that tore away at the good feeling she had worked so hard to build up.
The final blow came during a math exam at school. Lydia had been working vigorously to raise her "B+" average in math to an "A". Math had become her obsession. It was almost as if acing this exam would be another symbolic victory over her TS. It is important to continually encourage these children to fight against discrimination with achievement. However, as Lydia began to dissect the difficult equations, she grew increasingly nervous. With each stroke of the pen, her tics grew louder, until finally one of her classmates jumped up from this seat saying "can you shut the hell up already, you freak!" Lydia fled the classroom in tears. When her teacher ran out to the hall to console her Lydia dropped to the floor and shouted "There’s no point...why do I bother trying?"
Following this incident, both mother and daughter fell into a funk. Waves of negativity filled my office for the next several sessions. At that point, I stepped in as the voice of reason by compassionately but firmly pointing out to Lydia’s mother that TS was not to blame for all of Lydia’s problems. While the therapist must certainly empathize with the unique challenges the TS child faces, she must also help the child and other family members if necessary to develop a "thicker skin" when it comes to facing their own difficulties unrelated to TS.
In Lydia’s case, mother and daughter had become deadlocked. They were embroiled in a highly reactive, volatile pattern of relating where both repeatedly fed on the other’s insecurities. Their collective strengths were not surfacing, but instead had become swallowed up by a mixture of emotions that included guilt, sadness and anger. I want to note that these feelings were not only connected to TS, but also stemmed from the mother’s ineffective handling of her own lifelong struggle with low self-esteem. She had been attempting to bolster her esteem by being a good parent. While this was a step in the right direction, when anything outside of her "control" (i.e. TS) interfered with her efforts, she felt crushed and overwhelmed.
During one particular session with Lydia I seized upon an opportunity to break the deadlock. Lydia plopped down on the chair and stared at me sullenly for several moments. When I asked her what was wrong she gazed up at me with her piercing blue eyes and said "Ms. Rosen, why can’t I just be normal?" I told Lydia that she might have this condition for the rest of her life, but that it did not have to stop her from living. Lydia immediately responded in a desperate voice "but that boy called me a freak". I then asked her if she really believed she was a freak. Lydia hesitated a moment and then calmly said "no... but".
I interrupted with "but what?" "But my mom cries a lot about it" Lydia said. I asked her how she felt when she does that and Lydia said "mad...I want her to stop." I then asked her if she ever told her mother to stop and she said "no because she seems so sad". I asked Lydia if she thought that was because of her and as she twisted her hair nervously she said "no". I told Lydia it did not matter how the other kids reacted to her tics as long as she strived for her best. Lydia smiled as she left my office.
The following week Lydia’s mother requested to see me individually. She told me that she realized it was not only Lydia who needed help. She told me that one day Lydia came home from school and told her that the same boy had picked on her again, and that just as she was about to get upset Lydia said "Don’t worry mommy...I told him to shut up and worry more about failing math". She then began to sob as she said "I wish I had half the self-esteem Lydia has". I pointed out to her that she could begin to build real self-esteem by managing her emotions better and finding new ways to fuel her own self-confidence. This session marked an important turning point for the family, one in which a mother finally took responsibility for herself. Once Lydia stood up to her tormentor, her mother could no longer use TS as a reason for not facing her own psychological issues.
During our final sessions, much tension eased between Lydia and her mother. Of course there still arguments at times centering on Lydia’s growing independence. However, mother and daughter had begun to feed more off of each other’s energy. Lydia was now more prepared to weather any teasing that came her way. Treatment ended on both a note of optimism and caution. I reminded Lydia’s mother that while she had taken a positive step, this was only the beginning and that she needed to work on improving herself, otherwise she would not be able to keep up with Lydia’s progress. She told me she understood this and had decided to seek individual therapy to support her with the changes that she needed to make.
This case demonstrates the value of insight oriented therapy in addressing the effects of TS from an individual, family and social perspective. This can lead to more effective management of TS symptoms as well as greater self-confidence and a sense of resolve.
©2007,2008 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999