Awareness. Acceptance. Action. Advocacy. All needed when it comes to informing people about Tourette Syndrome at the national, regional, state and local level. Our Facebook page (give us a “like”! ) is dedicated toward these very things, especially when it comes to supporting the proposed federal Tourette Syndrome legislation.
Yes, we have a request of you. And no, it won’t take more than just a few seconds. If creating a better future for children with Tourette Syndrome is important to you, then there should be no reason why you don’t click here and support the proposed federal Tourette Syndrome legislation.
You can leave your Congressional representative a note just like this one and show them that Tourette Syndrome legislation is important to you, just like it is in Nebraska:
PeggyNietfield in Nebraska’s 3rd District
I have a child diagnosed with Tourette’s and he is being left behind in school. I have a story to tell that will not fit on this page. I am pissed off that he is bullied constantly in school because of his quirks and the schools do very little to help him out. I am a frustrated and angry mother who wants to see change. This past year I went to my son’s school and told the math teacher of my son’s struggle in her class and that I wanted to be her extension at home. I was shut down by the teacher who yelled at me for me wanting to be an advocate for my child who had consistently over the year had dropping grades in many of his classes. When asked if she would talk to his doctor, who is a behavioral specialist, I was told she did not do that stuff he was the same as everyone else and all doctor correspondences needed to go thought the counselor or his case worker the SpEd teacher who has done very little for even though he has an IEP. By the way he was to have his 3-year re-evaluation (paperwork sent home in January) and it is now August and the re-evaluation has not been done.
Also, be sure to read this awesome take on the legislation from KateE, who does an amazing job with the Tourette Syndrome Awareness Movement page on Facebook!
It’s sad that EVERY DAY I hear another horror story brought to me by our public education system. The laws are in place but it seems school pay little or no attention to them. They know what they are doing is illegal under the IDEA and still they continue. There seems to be no enforcement of these education laws or not a stiff enough penalty. I think it will take hitting schools where it hurts before they will be
proactive. So many of our TS kids are home schooled because parents just get to tired of fighting. A lot of times causing a financial struggle for the family. This is just so wrong. It is sad when that schools who are in the business of education seem to be the most reluctant to be educated themselves. The struggle with the school is more stressful than the actual disorder. JUST SO SAD.