Attending school can be challenging in many ways for children with TS. Parents advocating in a positive manner demonstrate their intention of being a member of the team that supports their child in obtaining an education. Advocacy is also the development of a collaborative relationship between the home and the school, which should begin early. Establishing a respectful relationship, which includes thanking people for doing a good job, provides you with credibility when, and if, something occurs later that needs to be changed.
Advocacy should begin as soon as there is suspicion that a child is experiencing difficulties in school. However, advocacy does not always mean that the student needs special education services or that a formal meeting must be scheduled. It may be important to request that evaluations be completed early as they provide a baseline of the student’s strengths and difficulties, which may be important in the future.
Stepping up to help with you child’s need in school many necessary for many reasons, which could include:
• A decline in grades
• Increased frustration
• Decrease in the child’s self-esteem
• Social difficulties
• A negative change in attitude about school
• Behavioral issues at school
• Increase in TS symptoms due to stress or anxiety
• Difficulties at home that are a direct result of school issues
Advocacy is sometimes no more involved than having a discussion with a teacher and/or providing information about specific symptoms that are interfering with the child’s daily functioning in school. Other times, advocacy is time-consuming and may involve research and meetings with a variety of school personnel.
Parents often want to protect their children and may tend to request that all challenges be eliminated. However, if every difficult situation is eliminated, the opportunity to learn how to manage difficulties in a supportive setting may be lost. For example, many students with TS have problems with time management and organization skills. It is important to request that a resource/consultant teacher assist the student in these areas to prevent failing grades, but also critical that they teach the student the skills and techniques to manage these independently when possible.
Also see Education Advocacy: The Basics for Helping Your Child
Parents may be concerned that their child will get “labeled” if they let the school know that she/he has TS. However, if the symptoms are significant enough that a diagnosis has been made, then most likely the symptoms are serious enough to interfere with school in some fashion. For instance, a simple eye tic may not be recognized as being a problem; however, there is one person for whom the tic is causing difficulties — the student with TS.
Early and positive advocacy demonstrates to the child that:
Self-advocacy skills are extremely important.
It is never too soon for the student to learn to advocate for him/herself. By advocating at school for their child with the child present, parents are teaching the child positive methods of self-advocacy which will serve him well throughout his life.
The parents are not ashamed of their child having TS.
Being honest about symptoms demonstrates that the parents are proud of their child and that they understand that difficulties are not the fault of the child.
The parents and the school are on the same team.
Imagine the increase in stress if the student becomes aware that the parents and school are in conflict. Disagreeing and advocating in a positive fashion is a healthy solution while prolonged anger and negative discussions with the child present can be counterproductive to the child’s best interest.
Advocacy is an ongoing process throughout the child’s school career. Choosing battles carefully is important, but so is keeping abreast of changing circumstances. It is helpful to begin advocacy early and to encourage a positive and collaborative relationship whenever possible.
It is common for a child with TS to need some modifications or accommodations in school; some children may need special education services while remaining in the general education setting. By sharing information and resources with the school, parents of children with TS will help the school develop a better understanding of their child. When parents develop a positive working relationship with school personnel, they are able to advocate for their child more effectively when and if there’s a need for support or services.
• Many parents have found it helpful to provide a one page description of their child.
• Begin by writing a brief paragraph that introduces your child and his/her positive attributes so that the teachers see your child as a student who HAS difficulties rather than a child who IS difficult.
• List challenges and what strategies or supports have been effective in the past.
• Attach a picture of the child enjoying a favored hobby or activity.
• Provide your contact information.