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All Tourette syndrome stories reprinted with permission of the original author.
Profiles of adults with Tourette's syndrome can be found here.
1. This is an eloquent example of the "reeling from a diagnosis" phase. This letter touched me deeply, as I have such a memory of the panicky period I went through when Tourette's first surfaced in our lives and such a soft spot for others going through this sometimes difficult time. I hope this letter will be of some help to others as they support the parents of newly-diagnosed children through those first days of getting to know Tourette Syndrome, so that persons like her will not feel that they have to remove themselves from avenues of support for their own well-being.
I just want to thank you for such a great webpage. A year ago you e-mailed me during probably the lowest time of my life. At a time when I could barely go to sleep at night without crying and would have to keep my emotions in check when I looked at my beautiful "ticcing" 5 yo daughter, you gave me much needed information and led me in a good direction.
I have come a long way since that time. I AM sleeping and my daughter has never been more beautiful (ticcing or not) then she is today. My daughter went through an odd time about this time last year (pretty complex tics), but as quickly as they started, they ended. I spent too much time waiting and waiting for the next episode only to drive myself deeper into my own depression. Then, one day, I realized months had gone by and nothing was happening. Oh, we have the occasional eye blinks and throat clearing, but the "terrible" episode I was so sure was going to come back, never did. WOW!
I was a regular visitor to the AST board and read the <old> MGH Website daily for quite some time. Then, I realized that none of the posts related to me. My daughter was mild to say the least. After the initial "bad times" I sometimes question if she has it or not. I now make the assumption she probably does, albeit extremely mild. I also realized that many, if not most, of the people who post to TS websites and chat groups are part of the minority - the severe cases of TS. I was so overwhelmed by the outlook I was being painted. I believe it was the reading of these posts that added to my own despair. One day....I just stopped. No more reading. It was the best thing I ever did for me and my daughter.
I decided to not worry about tomorrow anymore. I decided that I was not going to let someone else's story allow me to miss great moments with my daughter (I spent so much time waiting for new tics, I actually believe I was missing all the great things my daughter had to offer). I just stopped worrying about it. Now, I rarely think about it.
The reality of the situation is....I am a better parent because of this experience. My children and I could not be any more close because of this experience. I spent so much time trying to help my daughter understand what was going on that she and I are forever bonded. This has trickled over to my son as well! It seems odd, but I really believe that going through this has slowed me down...giving me time to smell the roses and appreciate all the small things our children bring to our lives.
This brings me to your website. Today I decided to go onto AST to see if any of the "newbies" I started off with were still posting. This is when I came across your website link. I was so amazed at how accurately you have come to understand TS. I have to tell you....I cried. I wish I had had your website when my daughter was first diagnosed. I would have breathed much deeper and known that "mild" was the norm and all the other symptoms my daughter never showed were not necessarily going to be part of her spectrum. It took me a long time to realize that you only hear about the severe cases. Most of us with mild cases do not seek out support groups or create our own websites. We are too busy living life.
I thank God, that you were not TOO busy living life, because you have given to the TS community a much needed look at TS. The average persons experience with TS and what and how to interpret all that information they are about to get. Thank you for taking the time to share you thoughts and experiences. I am so glad that your sons are doing so well and you are truly blessed.
I just wanted to let you know how your website affected me when I read it. I hope that every new person dealing with TS for the first time will be directed in the "Now What...So What" direction. Thank you again.
2. Pam writes: I recall the first time I heard the term "Tourette" in reference to my daughter. It made my blood run cold as I imagined my sweet, beautiful child turning into a mass of twitching flesh. So I convinced myself that those odd little movements were simply nervous tics, most likely due to some defect in my mothering skills, and vowed to be a better mother.
Eventually the term "Tourette" reared its head again and I decided it was time to clean the sand out of my ears, and began my journey into the world of TS. What I found was far from my preconceived notion of TS but was still not very comforting. In those first weeks, I was convinced that what I was seeing in my daughter was only the beginning, that we were in for a long and bumpy road and that my daughter would never have a normal life. Determined to get control of this before it got any worse, I dutifully made an appointment with a specialist.
In the long months before our appointment, I was lucky to meet many wonderful people online who assured me that TS was not the end of the world; that half the battle was putting a name to and understanding these movements; and that what we were seeing today could very well be all that we would ever see. Most importantly, that no matter what happened, my daughter was still the same normal every-day-run-of-the-mill eight year old.
A year and a half later, the term "Tourette" has become just a household word and no longer strikes fear in my heart. Today, when I think of all the things that could have befallen my daughter, I find myself thankful that it's *only* TS. My search to find out "why my daughter tics" has brought us closer together and has given me new insights into "how she ticks" (<— not a typo :-), something I may never have been able to appreciate had we not been formally introduced to TS. Meanwhile our world continues to revolve; my daughter is happy, healthy and comforted by the knowledge that she isn't "crazy," and her symptoms continue to be fairly mild. The future may be uncertain but I feel confident that we will be able to handle whatever may come our way by simply knowing that there is life, not only with TS, but beyond TS as well.
3. MY STORY, by Gary J. Marmer, (email@example.com), copyright 1999. In spite of my TS+, I have lived a full, happy and successful life. I earned a Ph.D. in physics and worked for 28 years at Argonne National Laboratory near Chicago; the past twenty years in environmental analysis and assessment. I have a wonderful wife and three successful children. I was past president of the Illinois Chapter of the Tourette Syndrome Association. I retired last year and have moved to Phoenix. I have symptoms of both OCD and ADHD, although I did not realize this until a number of years after I was diagnosed with Tourette Syndrome. After learning that I had TS, I chose not to take any medication since I had survived for almost 40 years without drugs. I have grown so accustomed to my tics that they have become a part of me. They helped develop my personality - without TS I would have been an entirely different person. I have met so many wonderful people - those with TS, parents, siblings, volunteers, medical researchers, and staff of the Tourette Syndrome Association. I'm not sure, if I had the chance to be cured, whether I would actually choose this course.
4. An online friend writes about her adolescent daughter: Tourette Syndrome has never ruled our lives or that of our child. Her tics are usually at their worst when she is least involved in scheduled activities such as during school breaks, particularly while watching television. When she is engaged in a multitude of high energy level (either physical or mental) activities, the tics decrease significantly. She has always done quite well in school, being one of the first in her grade to have qualified as intellectually gifted. She is also quite mature socially. Her achievements include numerous extracurricular activity awards, earning straight A's, and winning oratorical contests and a multitude of other awards, all on her own initiative. Her sensitivity and charisma have been noted by others. We feel that she has done so well not in spite of her TS, but because of it.
5. Another friend writes about her daughter: But in the meantime she is tall and gorgeous and a great dancer and did two musicals last year and is reading on a 3rd grade level going into first grade and is just the sweetest kid you could ever meet. So she sniffs and hums and burbles a little, but it doesn't seem to interfere with her life much at all. But thank God for the Tourette because it led us to find out about the celiac disease - something which killed both her grandfather and great grandmother in their 40's, because they never knew they had it.
6. An online friend who was finally correctly diagnosed after years of misdiagnosis: I might have TS+ for the rest of my life. But it won't define the rest of my life. I'm ready to move on. Got a dissertation to work on and company coming soon. And most importantly, a life to live! So I'm learning to live with the bipolar/TS through eating right (no miracle diets or supplements; I've found that very frequent eating of balanced carbs/protein/fat helps a lot), mild exercise (heavy exercise is good for some people with TS, but it exacerbates my dystonic tics a lot) regular sleep habits, and stress management. Tic substitution helps a lot also, and is relatively easy to learn. My goal is not to be tic-free, that would only lead to frustration and disappointment. Besides, I have other goals in my life which are far more important. My goal is to have TS interfere with my life as little as possible.
7. This writer persevered in sorting out her daughter’s Tourette Syndrome and bipolar disorder early on, avoiding medication trial and error: I really wish I could have read a website like yours when my daughter was diagnosed with TS. I had to weed through a lot of really old stuff that paints a bleak picture. Your website is great for a newcomer to *get a grip* so to speak. I have come to have some strong opinions about sorting it all out (splitting versus lumping). I now believe it is crucial to know what the whole diagnostic picture is. It would have benefited me enormously if I had the benefit of a website such as yours that strongly pointed out the TS/behavior/rage stuff. If we had accepted my daughter's diagnosis as TS, OCD, ADHD with Major Depression, we would still be on a very nasty road. When the *rages* are out of control, serious intervention is a must. If a child has *rage* or significant behavioral issues, the cause of it really needs to be weeded out. It should never be accepted as part of TS or ADHD or even bipolar. My daughter now takes the mood stabilizer lithium and no tic meds. She still has tics and we're all okay with that. The lithium keeps her behavior in HER control. If she chooses to whack her brothers because she is mad, she must take time-out and must apologize. I have the exact same expectations for her behavior as for her brothers. She is responsible for her behaviors and has to pay the consequences for them. Today, my daughter is a confident, insightful and very likable child, who displays admirable determination and an inner strength that has allowed her to be an excellent swimmer, ballplayer, student and budding musician.
8. Dominique, on online friend, writes: I've ticced as long as I can remember, but I never heard of TS until I was in my early 20's. I was SO relieved to have a label for it, I didn't investigate further for years. Finally researching Tourette's was sort of a big step, because I was kind of afraid to find out that maybe I DIDN'T have it. It's hard to say, but I guess I would say I have a 'moderate' case?? I'd say I tic AT LEAST a dozen times a minute. Tourette's never caused me any problems directly. In fact, it bothered my parents more than it bothered me and they spent years trying to humiliate me out of the tics. Because ticcing feels GOOD, in a way, I grew up thinking it was some perverse character flaw. That TS label did wonders for my self-esteem! I try to remind parents that TS itself isn't that big a deal for most of us, but that the reactions of the people around us (especially those close to us) can MAKE it a big deal. When parents talk of medicating for tics, I ask them to really think about it and spend some time investigating Tourette's and medication side-effects before they go ahead. Although a child with mild tics may get teased, so might the child with a big nose, or a different skin color, or a different religion. But we don't encourage plastic surgery, nor do we bleach our children's skin or convert their religion to help them fit in. Also, having never been medicated for my tics, I learned myself how to adapt and work with it. With meds, I may not have been able to do that.
9. Jaisplace wrote this post in response to a question about a particular neurologist on a.s.t. We edited it slightly to make it
My son was diagnosed about a year ago when when he was close to 8. I was lucky in that my son's neurologist did not make a big deal out of my son's TS diagnosis. We had suspected TS for a few months and had researched it pretty thoroughly before the actual diagnosis was received. His Doc said he thought it was great we were learning about it, but not to jump to any conclusions. We thought the "worst" from the research, mainly because that is what is most talked about. Perhaps in the case of some neurologists, other parents - whose children do NOT get "worse" over time - just quit seeing him/her and maybe just start checking in with their local pediatrician instead. The parents of children who may need extra medical attention will be more likely to continue to see the "specialist," so that some specialists may have a different view of the course of TS just because he/she sees those who need more attention. My son's neurologist said there was no way to know for certain what course TS would take, but that most cases are pretty mild and often will nearly disappear by young adulthood. And that a lot of cases are not diagnosed at all, or misdiagnosed or diagnosed late because the symptoms have been fairly mild and not really noticed until they have been ongoing for several years . My son is doing great, academically, socially, athletically and most importantly is very happy. He had a period this spring when his tics increased quite a bit, but they have now decreased substantially in the past few weeks. We are just getting used to the cycle of "waxing and waning", and it has become no big deal in his life or ours. He also has symptoms of OCD, but they come and go also. I think our best "medicine" has been an "it's no big deal" attitude and a sense of humor. We find that some of his tics are so "him:" he has several that are just adorable. Even the socially "unacceptable" ones he had, like spitting and burping were much easier to handle than I would have ever imagined in the beginning. It takes a little while to get there, but do try your best to get there. Our son is still just our son. He is as beautiful and wonderful as he always has been. Don't let generalizations scare you or cause you to see problems that aren't there. Believe what your heart and mind tell you about your child. You are the expert on him or her. The doctors can never know him or her like you do. Make sure YOU tell THEM about about your child. Don't let them tell you about other kids they have seen. Sure, they can use their experience to help and guide you and your child if needed. But they can't do that by generalizing to your child what they have seen in other children. My son has not been back to his specialist for almost 9 months. After completing the evaluation and testing of my son, his neurologist told us at his last visit to feel free to bring our son in if we felt he needed help of any kind or if we just had questions, but don't feel like we needed to bring him again just because he has TS. I felt uncomfortable with this advice at first, but in retrospect can see how it helped us not to worry so much. Hopefully, you can find a doctor who can ease your mind and deal with what symptoms your child is showing rather than instilling you with fear about what might or might not happen. The nonchalant, optimistic approach shown by our doctor has turned out to be a wonderful help to us, as our son continues to do well.
( firstname.lastname@example.org ) wrote:
Our son is 17 and was diagnosed with TS when he was 6 years old. We took
him to the Dr. thinking he had allergies since he was continually clearing his
throat. Our family doctor was called out on an emergency the day of our
appointment, so we had to see his associate. His associate immediately
diagnosed TS. I fell apart since I had just viewed a report on one of the
major network news magazines of a man who couldn't even function in society
because of his TS. What a blessing it was though, that this Dr. was the
one to see us that day. He was reassuring since his daughter, too had
TS. Well, 11 years have passed and we have made it through. Our son
is a well adjusted "normal" teenage boy with lots of friends. He
excels in sports and is third in his class academically, taking accelerated
classes. His friends have accepted his tics and just know he
"moves" sometimes. He was back to his neurologist just last
month and the neurologist asked him if he had any friends. He said he had
a lot of friends. The Dr. asked if they made fun of him. He said no, that
they all accepted just as he was. The Dr. turned to me and said he thought
he was well adjusted and there were no problems, so he thought maybe he should
treat me and not him. That sure helped to put things in perspective for
me. He is much more adjusted about this than I have been. I now try
to look at what a great kid he is and accept him like every one else has.
I was worried about his acceptance in our society today, but he has made the
adjustment without much pomp & circumstance. There is light at the end
of the tunnel and a great life ahead.
More Tourette's Stories
Last Update 04/26/07 08:17 AM
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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