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What is Education Advocacy
and When is it Necessary?

It is my experience that advocacy should begin as soon as there is a suspicion that a child is experiencing difficulties in school. However, advocacy does not always require special education services. Advocacy is sometimes no more involved than having a discussion with a teacher, and/or providing information regarding specific symptoms that are interfering with the child's daily functioning in school.

Sometimes advocacy is very time-consuming and can involve research and meetings with a variety of individuals. This becomes 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 regarding 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.
  

Sometimes parents are afraid that their child will get "labeled" if they let the school know that he has TS. It has been my experience that 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 seen by the teacher as being a problem; however, there is one person for whom the tic is causing difficulties - the student with TS.

You have waited too long to begin advocating for your child if he/she is:

• Failing
  
  
• Refusing to go to school
  
  
• Causing considerable difficulties at home due to the stress of school
  
  

Attending school can be challenging in many ways for children with TS. Parents advocating in a positive manner demonstrates their intention of being a member of the team that supports their child in attaining an education.

There are many ways in which a teacher can be supportive of a student who is having even minor tics without requiring special education services. However, all of them will require that the teacher be aware of what tics are and understand that tics are symptoms of a complex disability. Awareness is always the first step in advocacy.

Advocacy is also the development of a collaborative relationship between the home and the school which, in my opinion, should begin immediately. When everything is going well, it is wise to write notes of thanks and appreciation remembering to send a copy to the principal and the superintendent. It is similar to putting money in the bank. Establishing a respectful relationship by thanking people for doing a good job provides you with credibility when, and if, something occurs later on that needs to be changed.

I have found it to be important to request that evaluations be completed during early years. Completing the evaluation process can take months. Evaluations provide the basis for services and having them completed early prevents the waste of valuable time if, and when, serious difficulties arise for the student.

When I first began advocating for my son, I decided that we had to choose our battles with the school carefully and that two truths had to be kept in mind. The first was that no one was going to be able to cure him of the TS and the second was that school is the setting where learning to prepare to be an adult takes place. He required supports in dealing with difficult situations. However, if every difficult situation was eliminated, he would loose the opportunity of learning how to deal with similar situations as an adult.

I believed that it was important that he be allowed to experience many hurdles so that the school could provide him with good strategies to help him overcome these hurdles and be successful later in life. This was not always an easy decision to make or to follow through with, but I believe that it better prepared him to live in an adult world.

Students with TS can experience many difficulties that cause them to be less than successful in a variety of areas. Advocacy must include requesting evaluations for any suspected difficulty in order to determine if supports need to be provided by the school. Learning difficulties that are left undiagnosed frequently lead to excessive stress for the student. Remember that stress generally makes symptoms worse and that failure can snowball into situations that are not easily turned around. Studies indicate that early recognition and intervention works best. That is why advocacy should begin early and stay as positive as possible.


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 themselves. By advocating at school for their child, parent's are teaching their children positive methods of self-advocacy which will serve them well throughout their life.
  
  
• That 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.
  
  
• That the parents and the school are on the same team -
  I have experienced situations when the child knows that the parents and the school are in constant battles. Imagine the stress this creates for the student who is spending his day in an environment that the parents described as being destructive. This increases the stress level of the child as well as setting up a situation where the child can easily play the school and parents against each other. Disagreeing and advocating in a positive fashion is a healthy solution while prolonged anger and negative discussions with the child present can be dangerous to the child's well being.
  
  

Advocacy is an ongoing process throughout school. Choosing battles carefully is important, but so is keeping abreast of changing circumstances. In my experience, it is helpful to begin advocacy early and to encourage this positive relationship whenever possible.

There are times when impartial hearings and publicly disagreeing with the school is necessary and is not the fault of the parent. However, any and all attempts at avoiding this are well worth the effort.

For additional general special education resources visit the IDEA Practices Website: www.ideapractices.org and www.fape.org