We are interested in teaching our son to self- advocate. When do you suggest that he begin to attend school meetings?
It is important to begin the process of self- advocacy at an early age. School can sometimes be a frightening place for any student, but particularly for those who have difficulties due to inconsistent and misunderstood symptoms of TS and the related disorders. It is necessary that parents, whenever possible, communicate to their child that the teachers and they work as a team. An excellent way to demonstrate that is to allow the child to attend a meeting where parents and school personnel sit together at a table to discuss how best to help them be successful.
A main factor in effective self-advocacy for students with TS is to be comfortable discussing symptoms. This begins very early when family members talk about TS and symptoms the same way any medical condition is discussed. Too often we want to protect our children by not talking about a diagnosis. Unfortunately, this can result in the child assuming that their symptoms are something to be ashamed of which then carries into school life. Instead of being able to self-advocate, these youngsters believe it is best that symptoms remain a secret, precisely when it is critically important to be forthright about the specific impact TS has on them.
Additionally, being embarrassed by symptoms makes it difficult to be receptive to the accommodations/modifications and learning strategies that assist in managing significant symptoms. It is not unusual for us to hear from parents and schools that a student is refusing minimal, yet necessary, support because of embarrassment or the feeling that they are different.
Diversity has become a significant focus in today’s society and we can teach children that being different is not something to be ashamed of. It is helpful when they begin to attend meetings at an early age and recognize that the adults in their life discuss symptoms openly and in a positive fashion.
To that end, very young children often attend only the very beginning of an IEP or 504 Plan meeting. This allows them to introduce themselves and take baby steps at having a ‘voice’ by answering a few simple questions regarding how best to meet their needs. Rarely do we suggest that a young child remain for the entire meeting. Meetings typically involve discussions regarding various symptoms as well as skills deficits that result in low grades, social issues, attention difficulties, organization deficits, processing delays and ways in which various symptoms interfere with their and other student’s learning. The student may want to attend at the beginning of the meeting and leave after a few minutes.
As they get older, they will remain in the meeting longer and will begin to recognize the importance of their input. It is sometimes helpful to have your child write down what they would like to discuss during the meeting, or to use bullet points as a reminder as to what they wish to say. While it is appropriate for a parent to help the child brainstorm these points, it is best not to correct spelling or English because this should be heard in the child’s voice and not their parent’s. If they are only reciting what the parent believes the child needs, it is not teaching self-advocacy skills.
Attending meetings is an important way for the child to get familiar with discussing symptoms in a non-emotional, matter-of-fact manner and in a safe environment. You will want to speak with the person running the meeting ahead of time and let them know that your child will be using this as an opportunity to build self-advocacy skills.
Tip: Children between the ages of 13-18 can apply for the Tourette Association’s Youth Ambassador program!