I appreciate any awareness brought to the public about Tourette Syndrome. I have a 15 yr old son with TS. When he was first diagnosed at 7, the tics were mild throat clearing, etc. I did all the research at the time and swore no medications (not knowing what was in store for us when pubity hit). Finally, after many different doctors, we have the right "team" in place for my son. His vocal tics is the hardest to deal with. At 14, his vocal tics became very severe. Without medication, he would not have been able to function in public. However, this is at the expense of cognitive dulling. What a delemia for parent, not to drug and my son was a total outcast, or medicate at the expensive of his academics. Now, when I seem Tom Cruise say that NO child should be on medication, I would love to be able to say when you walk in my or other parents shoes then you have the right to speak. Yes, medications sometimes are tried to soon, or without true cause. However, I have a child who just wants to be "normal". He has been called freak, weird, everything than one can think. His tics were so severe he would not have gone outside.
I live in New York and you would think that the teachers would know what TS is...most do not.
This is for any parent of a child who needs assistance with their schools. ADVOCATE FOR YOUR CHILD.
Again, my son has TS a severe case. When a child has a disability that is affecting his academic abilities he is entititled to under the law an "IEP". School districts do not always follow the law.
TS is covered on "Other Health Imparied" in the 2004 Individuals with Disabilities Education Act (IDEA). You DO NOT have to have a learning disability (LD) classification to obtain an IEP. I live in a school district in New York that was in-serviced twice in the past by the Tourette Syndrome Association. My son had a 504 plan originally in place (not the same rights as an IEP). We requested an IEP under IDEA. We went to the CSE meeting for the IEP, and had was told that Tourette Syndrome had absolutely no effect on a students academic ability or social well being. This was from the head of the Student Services Dept (the person in charge of granting IEP's to all students). I had documentations, from doctors, teachers, etc. Of course, he knows it effect my son. My son was beat up, etc. TS is specifically spelled out in the law, here I have a son who has a severe case and have the proof that it is effected his academic ability. They were completely disregarding the law. If they would not give my son an IEPwith TS, what child with TS in the district would ever get it. Who should have that much power over a family. After investigating the matter my heart breaks for any parent that does not know the system or whom does not have the means to fight the district and get a lawyer. Many years ago it was very easy to get an IEP from a district. The districts used to get funding from the state/government. Then funds were cut to the district and "secret" caps are in place to try and keep the districts from not classifying too many children. My story is not an isolated story. These school districts (CSE Committee's) bank on parents believing that they are telling the truth and do not go further. For the parents who fight for the rights of their child has to incur legal fees and alot of extra stress and heartache. School districts have lawyers on retainers so for them their taxpapers would not really know what the all the legal fees are spent on. There are "paid advocates" who know the special education law and education lawyers. Obtaining an IEP does not mean that your child will have to be put in special ed. It is just about protecting them and giving them the appropriate support services that they need. It is so sad, that the children and families in a time of need is subjected to schools not acting in good faith. There was a U.S. Supreme Court ruling recently, that places the burden of proof on parents who challenge school districts on special-education programs for children. As a newspaper quoted as saying "This provides those districts who don't operate with good faith efforts (more power) to resolve differences using adversarial methods". From what I understand many Associations are fighting this. How scary is this. The govenment under "No Child Left Behind" has IDEA to protect childrens rights. Even when the necessary documentation of the child' s disabiltiy is presented a district can still say no and hope that the parent does not get legal advise and the district saves the money. In the past, I attended a TS support group. A single mom came in and told us that her school district told her that her son cannot stay in school because of his tics and has to have a tutor come to her house. Well as a single mom, how can she keep a job and not have her son in school. The facilitiator of the group said this is totally illegal. They HAVE to provide an education in school for him. I do not know this mother and have never seen her again. However, I will always remember the stress and panic on her face. How could she ever be able to start at fight the system for her son's rights. My son, myself and his father is lucky. We are given the proper guidence for my son. We do not want a lot of "crutches" for him. Just enough to level the playing field. He is athletic and puts one foot in front of the other everyday and goes to school. Hopefully if just one parent sees this and realizes that their child is entitled to rights under "IDEA" it's worth writing this (my first posting on a message board). Even after obtaining this "LEGAL IEP" I am told that the College Boards are the next hurdle. The College Boards is a private company and not governed under any agency. They are denying children with TS that submit their IEP's (I hear many other diagnosis also) that need testing accommodations. So now you have an IEP that says that the student is entitled to extended testing accommodations and they just have the power to deny it. I do not know what the future holds for my son. We want him to learn to embrace TS and be the best he can be. He is entitled to the the playing field being leveleved. How can a child on medication with proven side effects of cognitive dulling, TS, etc. being denied extended testing. Shouldn't they be given a fair chance. Note, the College Board used to grant the testing accommodations. However, they used to flag the test scores to the colleges. Alerting them that the students has a disabiltiy. Apparently someone sued and the College Board no longer flags the scores. The College Board has now made it very HARD to get the accommodations. However, when a parent/student has medical documentation that is verifyied in place for many years, etc. they should NOT be allowed to deny this.
Dr. Phil thank you for doing a segement on TS.
To all parents, whatever "Syndrome" your child has my heart and prays are with you. Let's help make our children be the best that they can be living in this very difficult world.
Does your child rage, scream and kick doors? Is his or her behavior the typical brattiness of a spoiled child, or involuntary behavior beyond the child's control? Dr. Phil sheds light on a pair of widely misunderstood extreme neurological disorders. First, he looks at Asperger's syndrome, a high-functioning form of autism which can cause a person to lack control over his or her emotions, including anger. Rich and Karen's 15-year-old son, Alex, was diagnosed with Asperger's at age 6. His sudden fits of rage and erratic behavior have put a strain on his whole family. Should his parents be afraid of Alex, or is there something they can do to bring his behavior under control? Plus, Craig, 37, can't control his physical tics, nor can he keep from constantly uttering obscenities, literally hundreds of times a day. Craig suffers from Tourette syndrome, an affliction that's gotten so bad, he won't go into grocery stores, movie theatres or any public place for fear he'll be kicked out. What will the disorder mean for his plans to start a family? Talk about the show here.
