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The basis of good and effective advocacy for students with TS begins first and foremost with education about TS and related disorders. Recognizing and developing a comprehensive understanding of these associated disorders that are most common for students with TS is critical. Secondly, an advocate must believe that if given a choice, every child would choose to be successful. Only if you believe this can you be an informed resource to the school and a persistent advocate who can assist the child with TS in being successful. You will need to work at helping the school understand TS so that they can provide effective and appropriate supports to the student.
Advocacy is more about educating and changing attitudes than it is about fighting the school. We must change attitudes so that teachers see the child as HAVING a problem and not BEING the cause of the problem. Teachers need to ask themselves; "what can I do for the student" instead of "what can I do to the student". Unfortunately, you can't write that into an IEP. There are no laws which state that school personnel must respond to students with TS in a kind, creative and supportive manner. In my experience, the majority of teachers would like to do this but are generally not knowledgeable regarding TS and are not taught strategies of teaching students with Tourette Syndrome.
Research has proven that harsh punishment, humiliation, and negative consequences are counterproductive in teaching children with TS strategies to replace difficult behaviors. The best approach begins with knowledge of how the disability interferes with the learning process of this specific student and continues with the development of positive and proactive interventions that are effective. This frequently requires a change in attitude (and possibly a Functional Behavioral Assessment that will be discussed in a separate section).
"It is your explanation of the behavior that leads directly to how you respond to the behavior" writes Dr. Ross Greene If your explanation is incorrect, it makes sense that your response will also likely be incorrect. For instance, a boy is constantly tapping his pen on the desk. If the true explanation is that he is doing this purposely to disrupt the class, asking the boy to stop is logical. However with knowledge of physical tics, the explanation for a child with TS may be that this is a common tic and asking him to stop will likely only increase the need to do this tic. With this new explanation, the response then would be to strategize with the student and possibly tape a sponge to the desk so that he can tap without making noise thus ending the disruption to the class.
The advocacy becomes more complex when it involves behaviors that are not obvious tics but are still a result of the TS. Consider a girl with average abilities and advanced vocal skills who refuses to write a lengthy essay. A teacher's explanation may be that the student is lazy and chooses not to do it; as a result the teacher's response will be to give her a failing grade as an attempt to motivate her to complete the task next time. It is the parent or advocate's job to assist the teacher in recognizing that the student may have the intellectual ability when tested by the school psychologist, but due to her disability, she is not capable, at the moment of performing the task. The refusal may be due to a number of reasons (dysgraphia, executive deficits, processing deficits, etc.)
This student has learned over the years that it is safer and less embarrassing to refuse to even attempt the assignment than to attempt and fail. An advocate needs to help this teacher in comprehending that the student's refusal to do the task is not due to laziness or oppositionality. Rather it is because the girl knows that she will fail if she tries and she does not like failing and having people think she is "stupid" or "weird". A "defiant stance" very often is a more socially acceptable alternative for students, particularly as they get older. Therefore, if a student is being defiant, the educators need to look at how they can provide support so that the student can be successful at the task so she will no longer need to be oppositional.
A successful advocate is one that can assist the educators in seeing the student as a CHILD who has natural abilities and is frustrated because of a difficult, complex and misunderstood disability that prevents her from being successful.
Frequently, it is the role of the advocate to first help those involved see a capable and good person who through no fault of their own has a disability which interferes with "typical" behaviors. Once you have accomplished this, advocating for creative strategies to assist this particular student becomes easier.
ATTITUDE!! The job of the advocate is to educate in a manner that allows for a change in attitudes.
Changing attitudes is not accomplished by being harsh and confrontational. It is human nature that people will be more likely to listen with an open mind to someone if that person is polite and respectful. I can't think of a situation that more aptly falls under the old axiom of "you catch more flies with honey than with vinegar" than of advocating for a student with behaviors that are misunderstood, perplexing, inconsistent and seen as being "deliberately disruptive". Attitude is not something that is going to be changed as a result of an advocate who argues the most aggressively or one who can quote laws and regulations. Attitudes are changed by being able to present information in a factual, non-threatening manner that encourages a respectful and cooperative relationship. Advocacy that encourages a team approach between the school and the parents frequently is the best approach to begin with as it works best in the long run.
For additional general special education resources visit the IDEA Practices Website: www.ideapractices.org and www.fape.org
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999