Advocacy Strategies – Working with your Child’s Teachers and School

(Also visit our Parent and Family Resources page)

General advocacy steps families may want to consider to assist a student who has Tourette and possibly related disorders.

Advocacy is sometimes interpreted as being confrontational between the school and family members. In most cases, this is the furthest thing from the truth. The most effective style of advocacy is developing a collaborative relationship with the school and demonstrating that you respect their expertise but that you know your child and will be there to support an appropriate education for them. When the school sees the child and the family as being in need of their support, it is usually a better outcome than if the family and/or child is seen as aggressive or using the diagnosis as an excuse. This requires educating school personnel about TS, possibly every year.

The school should see family members as being engaged in the child’s schooling but not hostile. Unfortunately, too often schools have experienced family members who come to meetings ready for a fight and family members have experienced school personnel who are not interested in learning about Tourette syndrome. It’s often difficult, but families need to put those experiences aside and work to educate rather than blame. Any time a people feel that they are being blamed or are being personally attacked, they become angry and defend themselves. This includes teachers and it doesn’t usually result in a positive outcome for the child.

Since educators are too often not taught strategies for working with children who have TS, they need to be educated so that their attitude changes from one of seeing the child as Being the difficulties to a more effective attitude of seeing the child as HAVING difficulties. This change is often difficult but is important for the success of the child. Family members need to be patient, accept that educators are not taught about TS in college but rather are instructed in a punishment or reward approach to behavior management. This approach typcially doesn’t work for students who have neuro-biological disorders that result in actions over which they have little to no control. By establishing a positive relationship, it becomes easier to have educators see that the child needs to learn strategies rather than to be punishment.

Overview of Education Rights Parents Should Be Aware of:

1 – Free and Appropriate Education
2 – Understanding Assessments
3 – Family Educational Rights and Privacy Act
4 – Least Restrictive Environments (L.R.E.)
5 – Basic Individuals with Disabilities Education Act (I.D.E.A.)
6 – Manifestation Determination
7 – When Parents Disagree with School Evaluations (See also Requesting an Independent Education Evaluation)

Other Important Things to Consider

  • May need to educate team annually or when additional staff added to child’s team
  • Important to keep in mind that many teachers were not taught anything about Tourette Syndrome, positive behavior interventions or strategies to assist students with these disorders
  • Some students will do fine with minimal support and advocacy. Others require more.
  • When possible, a positive and collaborative relationship is in the best interest of the child
  • It is important to the anxiety and stress level of the child that he/she is not made aware of differences of opinions or difficulties

Related Resources: Tourette.org (Education pages) offer information on:

TS in the Classroom, School, and Community
IEP/504 Meetings (Accommodations and Educations Rights)
Speech Pathology Services

Educator’s Guide for Developing Plans for Students with Tourette Syndrome

Step-by-Step Guide for Parents and Children Preparing for 504/IEP Meetings

The Role of School Nurses (Video)