Understanding
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Understanding Understanding Document Transcript

  • Understanding & Managing "Behaviors" by Kathleen J. Giordano TSA Education Advocacy Specialist Tourette Syndrome is one of the most misunderstood and complex neurological disorders that educators are likely to encounter. Educators, parents, and mental health providers are not always aware of the symptomatology of TS and of the several other associated neurological disorders that often accompany TS. It is therefore not unusual to misinterpret symptoms of the disorder as behavioral problems rather than the neurobiological symptoms that they are. All too often children with TS are punished for symptoms of their disorder and for behaviors that are determined by the school to be "disruptive". Instead, a philosophy which many teachers have found to be critically important in their work is one that Dr. Ross Greene, a noted psychiatrist and author of The Explosive Child, embraces. Dr. Greene states, "It is your explanation of the behavior that leads directly to how you respond to it." For example, if your explanation for a child rolling his eyes while you are speaking to him is that he is being rude and disrespectful, a typical response would be to reprimand and discipline him. However, if your explanation is that rolling eyes is a symptom of the child's neurological disorder, you are more likely to have compassion for how difficult that must be for him and therefore more willing to provide support to help this child. A 4th grade boy had a very difficult coprolalia symptom that involved saying a swear word. One day his teacher was doing a lesson on Alexander Graham Bell and asked the class what Bell had said right after inventing the telephone. The class was quiet when the boy said the word loudly . The teacher calmly looked his way and said, "No, not that; does anyone have any other suggestions?" This teacher had the correct attitude and saw this student as having a disorder, and not that he was attempting to get attention or be disruptive. She understood that this was a symptom, and therefore she responded to it in a positive manner. She could have humiliated him, sent him to the office, given him detention and possibly had him suspended. But what she did was to demonstrate to him and to his peers that he was OK. Her attitude was perfectly clear. She knew and communicated that she knew his symptoms were not deliberate or in need of "fixing". She didn't believe that he was being oppositional or "bad." He had expressed a symptom and she accepted that the world is filled with people with "symptoms" of one kind or another. What she demonstrated to the boy, and to the class, was that symptoms and differences are no big deal. ©Tourette Syndrome Association, Inc. 42-40 Bell Blvd., Bayside, NY 11361 718-224-2999 http://tsa-usa.org
  • A successful teacher, with the appropriate attitude, sees the student as a child who has natural abilities but is frustrated because of a difficult, complex and misunderstood disability that prevents him from being successful. Consider a student who is refusing to do work. One educator sees this youngster as having the ability but doesn't like doing a particular task and therefore refuses to do that task. That educator assumes that the student chooses not to do the assignment and therefore gives the student a failing grade. Another teacher sees the student as having the ability, but, due to his disability, he very often fails when attempting the task and has learned that it is safer to refuse rather than make an attempt. It is important to recognize that the student's refusal to do the task is not necessarily because he is being oppositional and defiant or does not like doing work. Rather it is because he knows that he will fail if he tries and he does not like failing. The difference is perception and attitude on the part of the educator. People in general are more likely to punish a student whom they see as BEING the problem. Likewise people will generally want to help a student whom they see as having a problem. (Again, "It is your explanation of the behavior that leads directly to how you respond to it".) If the educational team recognizes that the student has a problem and that he is not the problem, they will more likely want to provide unique and creative strategies for that student. When educators consider what they can do for the child and not what they can do to the child, the strategies are more positive, proactive and effective. With this approach, the student is more likely to find success. In addition, when teachers share in the positive feelings related to the child's success, it will encourage them to attempt other strategies that are positive rather than punitive. Below are selected sections from "Workbook for Conducting a Functional Behavior Assessment and Writing a Positive Behavior Intervention Plan for Students with TS" and "Tourette is More Than Tics". (Both of these are also included in their entirety on this CD.) Please refer to them and to our website, http://tsa-usa.org, for more examples of commonly misunderstood difficulties many students with Tourette Syndrome experience that may interfere with the educational process.) AGGRESSIVE BEHAVIORS Aggressive behaviors are typically a result of one or more of the following: unmet needs, frustration due to demands that cannot be met by the student, OCD symptoms, unrecognized sensory issues, inflexibility on the part of both the student and/or the teacher, touching the student who is hypersensitive to touch, restraining the student, student's sense of total failure, bullying or teasing, anxiety, hypersensitivity to criticism and exhaustion from suppressing symptoms. "RAGE" There is a small percentage of children who have outbursts of uncontrollable anger often referred to as "rage" as a symptom of TS. Generally, but not always, this is displayed in the home setting. This is neither the fault of the child nor the parents. Many parents blame themselves and are also blamed by professionals, friends and ©Tourette Syndrome Association, Inc. 42-40 Bell Blvd., Bayside, NY 11361 718-224-2999 http://tsa-usa.org
  • family. The R.A.G.E. (Repeated Anger Generated Episodes) brochure that is available through TSA is an excellent resource for professionals and parents who have children with these symptoms. It will help them understand that there is no one to blame, and that different strategies must be employed for children who have neurologically based rage. In fact, experience shows that typical interventions (including negative consequences) will only serve to increase these rage episodes. It is critically important that adults in lives of children with TS become aware of what reduces or increases the explosive response of the child. It is also important to be flexible and remain calm when dealing with children who have the severe misfortune of being affected by the symptom of neurological rage. OPPOSITIONAL BEHAVIORS Many students with TS have a secondary diagnosis of Oppositional Defiant Disorder (ODD). Children who are chronically inflexible will typically display ODD behavior. The support team must look for the underlying difficulties such as OCD, ADHD, TS, Asperger’s, processing difficulties, dysgraphia, sensory issues, etc. that are preventing the child from responding appropriately to a particular request and displaying instead behaviors that are interpreted as being generally oppositional and defiant. For example, a student who becomes oppositional only during a task that requires writing may be communicating through his behavior that he is not capable of writing. If a student displays defiant behavior in a particular setting, this may indicate that this setting is, in some fashion, overwhelming to him, i.e., the overhead lighting is distracting. DYSINHIBITION The phenomenon known as dysinhibition is characterized by difficulty consistently inhibiting thoughts and/or actions. Inappropriate statements or behaviors very frequently result from the student's inability to consistently apply "mental brakes". Dysinhibition means that a child cannot stop himself from expressing behaviors, thoughts, or displaying actions that someone else may more easily be able to control. Such behaviors might be displayed as excessive silliness, being sassy, free- associative comments, emotional outbursts, contextual swearing, blurting out, inappropriate comments explosive anger and oppositional defiance. Picture a sign that says, "Don't Touch, Wet Paint". For many of us, the sign is an invitation to touch the paint. We must fight the urge to do so if we are to obey the sign and the norms of society. We must inhibit the very behavior that has been suggested to us by the sign. We can easily recognize inhibition as being difficult for all children when we think of puddles on the sidewalk that are just begging to be jumped into. Inhibiting behaviors is challenging for all children but it presents a far greater challenge for students with TS due to this neurological disorder. We must understand that this is not purposeful disobedience but is merely a function of the brain that is affected by the chemical imbalances that cause TS. A young boy's teachers had a difficult time believing that every time this second grade ©Tourette Syndrome Association, Inc. 42-40 Bell Blvd., Bayside, NY 11361 718-224-2999 http://tsa-usa.org View slide
  • student said something inappropriate or acted in an impulsive manner that it was a tic. It is helpful if we understand that Tourette Syndrome is more than tics, and recognize that many of the difficulties a student is experiencing are "symptoms" rather than tics. All too often we think of verbal and physical tics as being the only symptoms of TS. Many students whether they have severe or mild physical and vocal "tics" also have a significant difficulty with the invisible but extremely disruptive symptom of dysinhibition. Therefore when this student is told that his turn on the computer is over and he makes an inappropriate remark, it is indeed a symptom of his TS. In these instances, it is best to ignore the symptom, but to include counseling support as an accommodation in order to teach him techniques that will help him to recognize that his “brakes" do not always work well. Over time, he may learn to substitute a more appropriate behavior but since the actions are impulsive, it may require a great deal of practice and patience on everyone's part. A SENSE OF CONTROL The inconsistencies of a child's abilities to perform tasks adds to the confusion for the child as well as for support personnel. Is it purposeful behavior or an expression of neurologically based difficulties? Refusals to do work may appear to be the child wanting to be in control. A more productive interpretation, however, is that the behavior may be a desperate attempt on the part of the child to bring a sense of control to a world of inconsistent difficulties and abilities. If the child is attempting to gain some control, support staff should examine what can be done to provide the student with control without relying on behaviors that are disruptive. Teaching strategies that result in the student gaining control of his environment may be extremely helpful in the short term as well as the future. Asking a student what can be done to help him be successful instead of asking why he isn't successful often aids adults in developing appropriate supports. This can also help establish an atmosphere of team work between the student and the educators as well as allowing the student to take ownership of the plan. IMMATURE BEHAVIORS Does the student get along well with his peers? Does he have friends? Are his social skills on the same level as those of his peer group? Frequently students with TS will act in an immature fashion and display behaviors that are typical of a much younger student even though they possess more advanced academic abilities. This may be due to a delay in developing the skills necessary to inhibit inappropriate behaviors in response to frustration or anxiety. The delays result in behaviors that are not age appropriate and, since the child may be academically advanced, the behaviors are often perceived by adults as being purposeful. It is also not unusual for the child to get along with either younger children or adults better than with children his own age. This delay is frequently seen in children with TS and should be explained as being a component of the disability and not manipulative and purposeful misbehavior. FIGHT OR FLIGHT ©Tourette Syndrome Association, Inc. 42-40 Bell Blvd., Bayside, NY 11361 718-224-2999 http://tsa-usa.org View slide
  • In general, students with TS have a heightened response to their environment. It is important that the student be placed with teachers who can remain calm in a difficult situation. Many students respond in a 'fight or flight' mode when they become overwhelmed. A calm approach will be much more successful than a volatile response which escalates the 'flight or fight' pattern. USE OF INAPPROPRIATE LANGUAGE Many people believe that a person must have the "swearing tic" in order to have a diagnosis of Tourette Syndrome. In fact, only a small number of persons with TS have this symptom. Ironically, while this is the most recognizable symptom, it's also the symptom that's most misunderstood. Coprolalia can be any socially inappropriate sound, word, group of words or phrase that people with TS produce. Simple phrases or words that are out of context can also be coprolalia. Some examples: “elephant”, “toys”, “coffee”, “shut up”, “jerk”, “donkey's have knees”, etc. The list is limitless. These socially inappropriate sounds and vocalizations are the symptoms most responsible for students being removed from class, receiving detention or suspension and being moved to a more restrictive environment. A common misunderstanding is that, in order for 'inappropriate words or sounds' to be a symptom of TS, they must be said "out of the blue" and must be repetitive in nature. This leads to the mistaken belief that if a student swears once and/or at an "appropriate" time, then it is not due to TS and therefore deserves punishment. Coprolalia can be one word, a string of words, a phrase, said many times or said once but repeated over time. It would be helpful if all symptoms were easily defined. This would make it easier to determine if the inappropriate behavior and/or statement is a symptom, or just typical 'bad' behavior. This would simplify how adults should respond to behaviors of children with TS. We at TSA are frequently asked, how does someone determine when something is a symptom, or if it is typical youngster behavior. TS is recognized by experts as being a complex disorder that is different for every individual and that symptoms are inconsistent, change periodically, wax and wane, and are increased by stress. We have no simple answer. The brain is a complex organ and it should be no surprise that a disability such as TS that involves neurological chemicals, synapses and brain functioning would also be complex. Imagine if everything in your thought bubble came out of your mouth. The mechanism that prevents this from occurring is managed by a part of the brain that allows an individual to inhibit movements, and vocalizations. Tourette Syndrome affects this part of the brain and thus the braking system of the brain is occasionally faulty. This often results in an inconsistent ability to inhibit behaviors, thoughts and statements. The inconsistency of a child with TS to inhibit the use of inappropriate behaviors and statements adds to the difficulty of understanding the symptoms of this disorder. For example, a polite 4th grade girl was being punished for being disrespectful to her ©Tourette Syndrome Association, Inc. 42-40 Bell Blvd., Bayside, NY 11361 718-224-2999 http://tsa-usa.org
  • teacher. The teacher reported that every time she said that the class was going to have a test or homework, the girl would say 'shut up'. There is no denying that this was inappropriate. However, it is also a symptom of her TS. It is easy to recognize that when the teacher told the class there was going to be homework or a test, most likely there were other students who were thinking 'shut up' - or worse. These students were able to stop from expressing these thoughts because they did not have a chemical imbalance which affected to some degree their ability to inhibit saying what they were thinking. The little girl with TS had the symptom of inconsistently being unable to inhibit, and therefore was not able to inhibit blurting out inappropriate statements that appeared to be purposeful. Adding to this is the reality that stress makes symptoms worse, increasing her inability to inhibit in a stressful or undesirable situation. Being told that there was going to be a test or homework is stressful to this little girl. Stress increased the likelihood of symptoms for her to inhibit 'inappropriate' behaviors and statements. Difficulty inhibiting may, for some students with TS, manifest itself as the occurrence of the more easily recognized swearing vocal tic. THE ROLE OF EDUCATORS Educators must carefully examine a situation that is creating difficulty for the student and look for clues that may suggest an explanation for the problem. Often children with TS do not understand what precipitated difficult and disruptive behaviors. If the behavior is a tic, the best course of action is to ignore when possible. Recognizing, teaching, and supporting alternative strategies and techniques to assist the student instead of relying on punishments and negative consequences are of the utmost importance. Once upon a time A man whose ax was missing Suspected his neighbor's son. The boy walked like a thief, looked like a thief, and spoke like a thief. But the man found his ax While digging in the valley And the next time He saw his neighbor's son, The boy walked, looked, and Spoke like any other child. Lao-tzu ©Tourette Syndrome Association, Inc. 42-40 Bell Blvd., Bayside, NY 11361 718-224-2999 http://tsa-usa.org