J.D. asks from Jonesboro, AR on July 17, 2008
Son Diagnosed with Tourette's
Our youngest 6 year old little boy was just diagnosed with Tourette's Syndrome. He had motor tics for about a year before his diagnoses then recently the tics became vocal. He has also been diagnosed with ADHD and anxiety disorder. He will be starting 1st grade in the fall and my question is does anyone have or know of a child who attends public schools with this disorder? And how well have they adapted to the environment. We are not sure how well other children will adapt to his vocal tics or how our son will handle teasing from other children. His father and I do not want to medicate him as the side effects are very harsh. There are no other children in the school system with tourette's (we live in a small town). Thanks for any help you can offer.
A.B. answers from Fayetteville on July 17, 2008
My brother is 42 years old and was not officially diagnosed with Tourette's until he was in his twenties (Tourette's was not widely heard of as it is today. Even in the 1980's when he was diagnosed, there were not many doctors who knew anything about the disorder).
With Tourette's, as I am sure you know, also comes a wide array of everything else: OCD, ADHD, Rage disorder, Panic disorder, etcetera. My brother never took any of the medication offered to him, as he was in the military when he was diagnosed, and the side effects were unbearable.
That being said, my brother, not knowing why he had tics and echolalia (verbal outbursts and swearing), used humor as a way to overcome teasing from his peers. Of the three of us (myself and my siblings), my brother was the most popular in school, and although his grades were always a struggle, he was and still is a very happy, well-adjusted person. He spent 12 years in the Army and during that time developed his talent as a stand-up comedian. He now is the host at a very well known Comedy Club in the United States, and he's 'made more of his life' than both myself and our oldest brother. I think with everything he had to go through he felt like he had something to prove, and he overachieved and worked hard to achieve his goals in life.
He drives (he can't purchase vehicles that have the number 85 on the speedometer, because he focuses on the number), he has a college degree, he has an AMAZING apartment, he chose not to get married (although he was engaged for 4 years), he is highly successful in his career, and he makes a lot of money doing what he loves to do. He is a Christian, but because of the echolalia, he does not attend church. He does not feel that this makes him a bad person--he just avoids quiet places.
I guess I told you this because yeah, it was tough for him, but he's amazing. He is the success story that I guess I thought you would like to hear.
You are going to have a lot of ups and downs, and so is your son. But with patience, understanding, and endurance, his life can be as normal as anyone else's. Keep your head up and stay strong. And especially keep your sense of humor. My brother has made myself and my entire family a group of very funny individuals. Laughter really does diffuse a situation. And in the case of my brother, it has made all the difference.
Good luck to you J.. My thoughts are with you and your son.
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C.B. answers from Mobile on July 19, 2008
I have a son who was also diagnosed with ADHD and Tourette's Syndrome. His did not get diagnosed until he was in the 5th grade.
I did a lot of reading and reseach. We too lived in a small town, the public Library did not have anything about the subject until I went there and had them order the books that the doctor gave me a list of. One of the most important thing I learn from the research is that a child with ADHA/TS should be kept on a schedule. He took a bath, ate meals, went to bed and woke up at the same time everyday. It keeps them better focused. I also watched his diet, not too much sugar. The second most important thing was that I never correct him with a negative. It can confuse them. ( instead of don't put you feet on the table, you say, our feet go on the floor.)
As for the medication, you may want to give that more thought. My son was on a catapres, used for blood pressure. It would slow him down just enough to help him to concentrate. We had to figure out what dosage was best for him. He is 27 now and not on any medications and he is doing just fine. Another thing he and I learn was that he can not stop his tics but he can move them. The tics can cause him pain, so he would concentrate on not ticing in that place and it would stop, but start somewhere else.
My son went to public school and was in a regular class untill he was in Jr. high. I do not know where you are, but in south Louisiana where we were living the schools started hiring teachers that specialized in teaching children with disorders. So when he reached Jr. high he was put into a class with regular kids and a teacher who was trained to know how to handle him.
Lucky for me he only had the motor. So I really can not tell you anything about how to handle the verbal.
I attended some support group meetings, although I had to drive 60 miles to find one. It was very worth it... Good luck and God Speed! C. B.
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H.W. answers from Tulsa on July 17, 2008
HI, It's a small world. I also live in Sand Springs and my 6 year old daughter was diagnosed last month with Tourette's. She has had tics for the last year or so. Luckily they are not very severe and usually only noticeable to those that know her. Other people just think she is is hyper-active. At the doctors advice we did not tell her she has tourette's because it has such a negative reputation. She tells people she has a motion disorder. So far it has not interrupted her education, except when the teacher sent her to the office for rolling her eyes. She starts the first grade next year and hopefully her tics will remain minor. I know it's a scary thing to face. We should keep in touch!
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K.S. answers from New Orleans on July 18, 2008
J., with no other children in the school system with Tourette, I highly recommend that in your IEP process you have them include under needed supports for teachers/staff that they have an inservice at the school on Tourette Syndrome and Teaching children with Tourette. Everyone that will encounter the child should have the training. I give this training in our area which was developed by the National Tourette Association. I have a copy of it on CDrom and will be glad to mail you a copy if you'd like to see it. I has video clips of children talking about what it's like to have tourette and the difficulties in doing schoolwork that they often encounter. There's a section for teachers on teaching children with Tourette as well and extensive print handouts all on the CDrom. There are videos also available through the National Tourette Syndrome Association. I don't have their contact info handy, but I'm sure if you google them, it will come up. Also, you need to contact your Parent Training and Information Center and be sure that you discuss what your child needs in the IEP in depth. Have them look at the evaluation and IEP and make recommendations. Depending on where you live, they might even be able to attend the IEP with you as an advocate to assist you and the school system to understand your child's needs. It's important at an early age that you establish your support of them for information. Share whatever books you have on Tourette with the teachers. Make folders each year with info on Tourette and give them to the teachers and others who are interacting with him. You may consider requesting to do a presentation to the class to teach them about Tourette each year. This is effective with parents of kids with Down syndrome and we've done it. It works wonders because if they do make fun, it's because they don't understand. Once they understand, the kids are amazingly supportive and helpful. If you can get the lady from Nat'l Tourette Assn. to come to your school to give the presentation, she's PHENOMENAL! She has all kids of great stories about how kids have accepted their classmate withTourette and when a new tic develops even told the child with TS "hey that's a great one!" When they heard the new tic.
You can reach me directly at ____@____.com if you want me to mail you a copy of the presentation.
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K.D. answers from Baton Rouge on July 18, 2008
I have a 10 yr. old son who has ADHD, anxiety disorder and is somewhat on the autistic spectrum. He doesn't have Tourette's however the issues that he has can be somewhat overbearing. We have tried public school in the beginning and loved it, but I wanted to give private school a try due to the small classroom size and the fact that I wanted him to have a religious education as well. I have found that the private school setting does not want to accomodate his special needs and we are putting him back in the public school system. I'm a bit nervous because he is older and the teasing at this age can be rough, however, I know he will be well taken care of and the school is more equipped with children with special needs like Tourett's, ADHD, Anxiety, Autism etc. You will very surprised as to how wonderful teachers will bend over backwards to help your child. You may want to sit down and discuss his issues with the princpal and have an IEP drawn up for him. I promise you, he will be fine.
I'll keep you in my prayers.
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K.S. answers from Birmingham on July 18, 2008
I don't know very much about Tourettes's Syndrome, but as with any issue a child may have difficulties may arise. Make sure to keep in close contact with the teachers and administration, and as someone has already commented, it would be a great idea if every teacher and adminstrator who comes into contact with your son has training. I'm an educator, and I can't tell you how many times a child has come into my class with a "disability" and I had no clue how to best handle it. The good thing is that since your son's classmates are so young, they will probably be less inclined to tease him about it. His ticks and vocalizing may scare them initially, but any good teacher will know to explain to the other students what's going on, and that usually puts any fears to rest. It may even be good for your son to tell his classmates about his diagnoses (if he's not too shy). I visited a school where I live where children with severe disabilities and children with out any disabilities are in the same class. I was AMAZED by how everyone interacted. It was as if the students without disabilities didn't notice any differences at all! They were very protective of their classmates with disabilities and were quick to help them with whatever they needed. Hopefully your son will be just as lucky. Good Luck to you and your family.
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J.H. answers from Oklahoma City on July 18, 2008
Not sure if you ran across this site yet, but it has a lot of helpful info for both parents and educators...
One of my girls has ADD and the other has anxiety problems. The way we've decided to keep it under control is thru diet change. I've taken both of them completely off processed & fast foods and anything containing additives like MSG - there's a claim of a link between that and the upsurge of neurological and morbid obesity problems in kids recently. And the FDA still doesnt regulate the amount that is placed in our food. Their overall health has seriously improved - they havent been to the doctor for an illness in years, and my youngest had developed very bad allergies. She hasnt needed medications for them even. If I ever get the time between everything else I have going on, I plan on creating a cookbook that gives healthy recipes for all Americas favorites - Hamburger Helper, Mac n Cheese (we call it Mac n Yac), Hidden Vally Ranch dressing, etc. Its even super easy to make a healthy alternative to Sprite. If you need any help with making the switch, just let me know & I'll be glad to. Another helpful site in that regard might be www.cancerproject.org. They help explain the link between our diet and increase in cancer rates and offer a free booklet on child nutrition. I hope this all helps & good luck :}
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S.L. answers from Lake Charles on July 18, 2008
I would not sacrifice his education because of the disorder. He will probably have to be in a self contained class, but he needs to be in some type of school setting that can teach him. What are the medications and the side effects? Sometimes we have to accept some side effects to get some quality results. My granddaughter is self contained and it was one of the hardest things for me to do. She has many disorders and the ADHD and the anxiety are the easiest to deal with. She is going to the 8th grade and will probably never leave home, but has gained many skills and learning while attending public school. She has a 4th grade learning level, but will be able to do some small job, with supervision, that will make her feel like she has achieved some of her goals. Small towns are usually a lot more accepting of disabilities in people. Fight for him and get him the best educations and life skills that you can. He deserves it and will some day thank you for fighting for him. God always has His Hand around these children. Pray for strength and guidance. He will give you the tools to get him where he needs to be in all aspects of his life. You will have to be your sons voice while he is so young. When one door closes, go to the next one. There is always a door that will open for you and him. Good Luck
Let us know about his school year.