Help in Educating Kids With Tourette’s

Fifteen years ago, as I witnessed the birth of my godson, I never dreamed I would be so profoundly and forever touched by a vexing, often misunderstood and frequently misdiagnosed condition known as Tourette’s syndrome, a neurobiological disorder characterized by involuntary motor and vocal tics.

Since personally experiencing the pain, anguish and family havoc that Tourette’s can wreak, I have lent my voice to radio and TV public service announcements and devoted significant time to events aimed at bolstering awareness of the condition.

That’s why I’m concerned about the details of the forthcoming legislation to reauthorize the Individuals With Disabilities Education Act, or IDEA, which provides a free, appropriate public education to eligible children with disabilities.

The purpose of the reauthorization is to improve, not harm, a system that provides individualized instruction to 6.4 million disabled infants, toddlers and students up to the age of 21.

The reauthorization should allow disorders such as Tourette’s a chance to be included as a recognized disability. Tourette’s is often accompanied by other associated disorders, most commonly obsessive-compulsive disorder, attention deficit hyperactivity disorder and nonverbal learning disabilities. But most children with Tourette’s have different and distinct educational needs beyond those youngsters with other conditions and therefore should be recognized as such by IDEA.

Take, for example, a child with Tourette’s in an elementary school setting. It’s easy to understand how large motor tics might interfere with classroom performance. If a child’s head jerks from side to side or an arm flails continuously, the interference is obvious.

However, some of the barely noticeable tics can be the most disruptive to learning in a classroom setting. One very common facial tic is constant eye blinking. Try reading or writing while your eyes are constantly blinking. It is nearly impossible. Yet this is a tic that few educators pay attention to because it does not disturb others in the classroom.

Similarly, a child with a finger-crossing tic may go unnoticed because of the quiet and unobtrusive nature of the symptom. Writing, however, becomes extremely difficult for such a child, if not impossible, and taking notes becomes a most frustrating experience.

Despite their will to succeed, children with Tourette’s sometimes find that their symptoms make learning almost impossible without special assistance.

IDEA could be an enormous help to these children; however, the assistance would be more effective and reach more such children only if the following recommendations were implemented in the course of reauthorizing the federal act:

* Tourette’s syndrome must be listed as a separate and distinct disability under the appropriate IDEA category of “other health impaired.” Educators continue to mistakenly see Tourette’s as a behavioral or conduct disorder, which results in the improper placement of many of these children. The condition is a neurobiological health impairment and should be recognized as such under the proposed reauthorization of IDEA.

* The eligibility for special services and accommodations should be based on the presence of symptoms that compromise school performance. In many cases, as it stands now, a child must first fail before qualifying for services.

* Discipline provisions in the law need to be written so they do not punish children for the expression of Tourette’s symptoms.

Educators acknowledge that any behavior that is harmful to others must be controlled and that students with Tourette’s are responsible for their behavior. However, tics, both vocal and motor, are very frequently misinterpreted as bad behavior or intentional classroom disturbances. Tics are uncontrollable and irresistible neurologically based urges.

* In order to achieve the best academic and social results for children with Tourette’s, early diagnosis is paramount.

The law should require and provide training for teachers regarding Tourette’s syndrome and its accompanying neurobiological disorders.

Under the Individuals With Disabilities Education Act, there have been great strides made to help children with disabilities receive a free, appropriate public education. But more needs to be done.

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Actor Richard Dreyfuss has narrated films and public service announcements for the Tourette Syndrome Assn.