Son Diagnosed with Tourette's

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.

:)

3 moms found this helpful

Hi J.,
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.

1 mom found this helpful

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!

1 mom found this helpful

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.
Take care.

1 mom found this helpful

Dear J.,

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.

K. D.
Prairieville

1 mom found this helpful

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.

1 mom found this helpful

Not sure if you ran across this site yet, but it has a lot of helpful info for both parents and educators...
http://www.tsa-usa.org/
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 :}

1 mom found this helpful

J.
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.

God Bless
S. Miller

My husband's best man and college buddy has tourette's and he has done really well. I believe he's an aerospace engineer and musician. I don't know how his early school days went, but by college everyone understood and he has great friends. Good luck!

I do not have a child with Tourette's but am studying to get my license in P-4 education. We just today discussed children with special needs. If I were you I would talk to the school before the school year starts and begin to initiate a plan for how they want to accommodate your son. I am sure between you, his teacher and any specialist the school has you can come up with a plan to deal with this. I am not sure this helps and I wish you all the luck in the world.

We also have 3 boys, ages 19, 18 and 15. The oldest also has tourettes. However, much to the specialists amazement, he does not have any of the usual problems accompanying it such as sleep disorders, AHDH, anger, depression, etc. He graduated 2nd in his class with a 4.22 gpa and is living in a large city attending college. He really didn't have any problems with the other kids. They basically grew up together from headstart on. He always had the disorder but we really didnt realize it until he as about 8. He suppresses his at school and around people other than family. He has the motor tics as well as vocal. Not the cussing just variation in loudness while he's talking. He got more comfortable with the disorder by about his junior year in high school. we noticed that he was not suppressing it as much at school, just kind of going with the flow. His varies from month to month or week to week. It changes from one motor tic to another just whenever. The important thing is to make him understand that he's not weird or a freak. EVERYONE basically has some little idiotacy about them. We talked to his teacher each year and let them know about it but other than that we didnt make a issue out of it and tell everyone. If any child asked why he was doing something, we just told them that he had an disorder that caused him to do it and he couldn't control it. That seemed to satisfy anyone that asked. We tried biofeedback, which the doctor had a lot of success with in helping them with their grades, sleep problems, etc. It didnt help our son because the only problem he had was the TICs. Everything else appeared perfect. It's important not to punish him for actions that are caused by the disorder. Our son, we've noticed, has a complusive sort of disorder along with it in that he washes his hands everytime he pets the dogs or cats or goes outside, which actually is good! One thing we have noticed is that he is a perfectionist. They may either be a perfectionist or let everything go in array. When he was little, 4 or 5, he did not like anyone "reading" his books because they would "bend his pages" or get them dirty. He is still like that only not as adamant! He likes everything a certain so-so way in his apartment. He goes to college, a Sophomore this year, lives in a big city 2 hours from us and pays his bills on time without reminders, goes to class on time, etc. Comes home every couple of weeks. The way we look at it is that every one has some problem or another, whether physical or mental, We are quite proud of his acomplishments and how he handles his tourettes. His friends will accept him for who he is; those that don't are not friends and do not matter. Just give your son love and support and he will be fine.

I saw where another poster had mentioned the Primetime show about Tourette's and wanted to add that if you have a computer, which I assume you do, since you posted your Question. You can go to ABC.com and watch that show on your computer, as ABC has almost all of their nighttime shows on their site starting the next day after they show them on TV.

I think it was Tuesday night that ABC had a special on tourettes. It was called Family Secrets and went through the life of several children with this affliction and how they delt with public school and life in general. Also it let the world see how overwhelming this can be on the rest of the family, it was very informative. I wish your family well and there is a lot of supportive evidence stating that tourettes can be severe as a child and significantly symptoms lesson as that child ages.

L.

I do not personal know anyone. I do think that most kids welcome your son but I was wondering if the teacher would allow you to talk to the class about your son and his needs on their level so they will get a better understanding of these. I know this is done a lot of times with kids who have diabetes and other problems.

Hi,

I would like to suggest a wonderful technique that could help banish the Tourette's altogether. It's called EFT and you can find a practitioner near you by doing a search on the EFT website at http://www.emofree.com/Practitioners/referralMain.aspx

If you don't find a practitioner near you, some do phone or email sessions.

At the very least, EFT can help your son deal with things like teasing and self-confidence issues related to having Tourette's.

M. :)
http://www.enidmg.com

I would consider homeschooling him. There are many benefits to it. That would give him a chance to get used to the disorder himself before having to deal with other kids. It would also get him a firm foundation in academics without the distraction of other kids. Get him involved at a church for his socialization.

J.,
Does your son spend time around other children now outside of your home? His response will most likely be the same. I would say, as an educator, that the most important thing is to have a teacher who will be very supportive and know how to handle not only his tourette's diagnosis, but also his ADHD and anxiety. I hope that you can go to the school and request a teacher with a relaxed manner, and one with some experience dealing with a special needs child.
D.

I am a first grade teacher in the public school system. Each year I have several special ed. inclusion children in my room. I have never had one of my babies picked on. My children have things such as Asperger's, ADHD, and other learning disabilities. I will have this students along with average and gifted children. The children are usually very protective of their other classmates. The special ed. teachers also are extremely helpful with teaching the students social skills that help them adapt to classroom and playground situations. They also have interventions that can help a child in the classroom. For example, one of my children this past year use picture cues on his desk to help him remember to stay on task. I would recommend working with the professionals in your school system to help your child be happy and successful in school.

I actually just saw a special on primetime about tourettes. There is a camp for kids with tourettes, they all have it, so they can relate to one another. You should google it, all the kids on the show attended school. 1 girl though had it so severely that they recommended she take a break and be home schooled for a bit.